Tuesday, February 11, 2014

Mallory Housekeeping

Ahhh housekeeping. Long and boring- much effort to keep up with what has become our routine medical housekeeping. From the delightful ladies who take care of your room on vacation to the snarky joke every time there is a knock at the door, bonk chica wow wow- but I didn't order any housekeeping to the term describing taking care of basic procedures of an operating system.

The month of January was a lot of housekeeping for our family. We actually hired a housecleaning service. This brings me joy. It is bittersweet as I really am sad that keeping up with the housework is so taxing- BUT I never really enjoyed it so that is a pretty easy task to hand over. I am so grateful for those who have pledged support to our family and please know that your donations are going towards something that makes my life so much easier- and cleaner!

We had many appointments to keep up with all of our various medical conditions and well as some drama and paperwork surrounding the school situation and Lily. It never ceases to amaze me how much of policy is steeped in fear of litigation rather than the common sense best interests of people.

Jen's Update.  We met with my oncologist in January and again today. As we had figured- my course of chemotherapy is continuous. Although we may reach a point where I choose to take a break, that break would really mean skipping a cycle of the harshest drug, abraxane. It would be a break to recover from side effects and hopefully get some energy back and feel better if only temporary. After watching how horribly sick Lily and others have gotten from nastier chemos, I feel like it is not my place to complain. All I can say is that the fatigue is real and limiting. The GI effects are gross and also limiting but I'm learning to work within that. The pains so far are temporary.  When these effects become too much of a burden on me and my family, we will discuss options. It is a balance. It is an unchartered path. Chemo and Cancer Choose your own adventure.  A balance of side effects and dying. I would be lying if I said I hadn't been horribly down lately. I have been working hard at redefining my goals and perception of our new reality.  Sometime you have to just bite the bullet and say- yeah it sucks but this might be the best it ever gets- this is our new normal and learn to function within it.  There were mornings I burnt the bacon. broke the bowl. grated my thumb in the queso. Phil always said I put a little something special in my dishes- I don't think that's exactly what he had in mind. I miss cooking.  I miss the ability to cook. The ability to keep track of time and multitask and not constantly fumble things that I try to grab. Phil jumps when I grab sharp objects. The kids run to grab me covered cups.  I miss feeling good. But know this is the new good. I miss being able to whip out a blog post and think clearly. SO I take my time and get to it when I can. I hate that things are so hard. But am glad that they still ARE.

Today we talked scans and quantifying tumor burden. It is terrifying. I will do another PET/CT  soon which is an absurd amount of radiation. Yet it is the best way to quantify and gauge if the chemo is working and to what degree my tumors are responding or not. I swear I'll remember to get printouts this time, but know my memory is less reliable than the queso at this point. We will do another ECHO to make sure there isn't any heart damage developing. And I am going to talk with a GYN Oncologist to discuss the removal of the run down baby factory machinery. Fact is I'm not using it. The bits are rusting and the rust is polluting the groundwater. Although ovarian cancer is not huge in LFS, it has been seen and since I'm not using them- it may be best that they go. With 4 c-sections under my belt- the poor uterus has seen a lot of trauma and may rebel with rogue cells at any time. I am comfortable with removing them both and they produce estrogen that can feed the very cancer I am making myself sick trying to fight.  And with that we trade one set of side effects for another. I don't want to have another surgery and right now it is tough to plan. SO we opted today for a shot that will stop my ovaries until we can plan the surgery. Without getting into too much gritty detail- most women go into menopause with chemo. I did not. I have always been fertile and obviously the garden was not going to die without a fight. It makes me nervous(and doubly miserable every cycle) so I would rather not stress that my body is producing too much estrogen and feeding tumors.

Jen In a nutshell- Keep Calm and Chemo On,  check on heart, schedule hysterectomy around chemo and life. 

Update on Phillip- Phillip joined the wrestling team at the beginning of the year- I have a great post on that I might get around to finishing some day. The activity is good for him but raises issues of weight class which I am NOT a fan of. He was not doing the best he could with blood sugar management for his diabetes. A dear friend - also a doctor- assured me that she's seen many a diabetic 14 year old who uses blood sugars as their control item. That's my problem- I would like him to CONTROL it. It's not out of control, it's just not where it needs to be and I need it to be better because I just can't worry about him, but I do and I will always.  But before his endocrine appointments we go over his numbers and talk about how we can do better. I plug the dongle in- and yes that is the official term and adequately describes it's uselessness- and try to download his data. Nothing. I look at his glucometer and can only find some readings from December. There's a hole in the screen and black lines across it. He is tasked with manually recording his glucose readings- his pump should keep track of his insulin intake. BUT the battery cap keeps falling off that. Add to housekeeping items- discussion of new pump.

Phil arranged to take Lily and Phillip to their conglomerate of appointments for a couple reasons. 1) they are a stress for me and he's wonderful and trying to decrease my stress and 2) hospitals are germ factories and a little infection or cold could knock me out. I have to admit the thought of a cold in my glittery tumor filled chest is frightening.  Phillip's A1C(measure of glucose bound to hemoglobin- essentially a 3 month idea of blood glucose averages. ) is creeping up and we need him to get that back under control. There's a new pump system with medtronic- they call it an artificial pancreas- which any diabetic will tell you- it is NOT- BUT it is one step closer to closing the loop for this special population. It uses the same pump to monitor blood glucose and insulin. Unfortunately there are 2 sites- so he will have to wear two different walnut sized patches- one that monitors his blood sugar(and can be set to turn the pump off if his blood sugar drops ) and one that delivers insulin.  Because Phillip is 14 and wants to be normal- he lets his blood sugar run high for wrestling. This means he doesn't give himself enough insulin. This is a problem- because how can he get bigger and stronger if energy is floating around in his blood stream and can't feed his cells? Don't even get me started on the carcinogenic implications of free floating sugar...he's heard it from me and it may be harsh but it is a mutant reality.  If he is old enough to clash his violent little clans or play death con 89 on wii- he can readily understand future implications of mismanaging his sugars.

Blah blah Boy Nutshell- Keep Calm and Manage Blood sugars. Phillip will be trying out a new pump soon. He is doing well for a 14 year old, even though we would like to see better control of his diabetes. His grades are excellent and his piano talent is phenomenal.

Miss Lily Monkey Update- Spunky Monkey is very smart and knew her appointments were coming. We had a check up, a bone age,  a 24 hour urine catch (good times to be had by all- it measures certain hormones in her urine to tell us if she is having normal hormonal development of excessive hormones that might mean possible oncology issue) an MRI and a stimulation test to see if her remaining little adrenal gland is still trying to be the lil adrenal gland that could. She is a little rockstar. And when she wears her hearing aids she is a not tone deaf little rockstar. Yet Bella is completely tone deaf so we really cannot blame the chemo for everything.   Lily is managing her fears of getting poked and doesn't use any numbing cream or patches- as those annoy her more than the stick. Our nurse is awesome- and does great despite her own personal fear of needles. I often wonder what kind of person becomes a diabetes educator/nurse when they are terrified of needles. Well it's someone who is strong and overcomes fears- which is the exact person I like for the job.  Lily also tackled another MRI without sedation and the tech said she did so well he thinks she can do the full body MRI in July on her own. I hate that my kids are having to master these routines- but so proud of them for taking it in stride.

 All in all the news was good. Her bone age is advanced still- due to the excess hormones she had from the tumors- she will always probably track a bit older. Our endo who I trust completely is not concerned. The MRI of her abdomen came back unremarkable, nothing of concern- NED- oh dear dear friend NED. The stimulation test was the same as last time- meaning her adrenal gland has a very little amount of activity and we cannot trust it- yet. We will keep watching it, but for now this means she remains on daily hydrocortisone meds and we will always have to watch her with sickness or injury.  Her other levels are all appropriate and no cause for worry. She is a big girl and physically advanced, but she is healthy and doing well. For this we are extremely grateful.

Monkey Nutshell- Keep Calm and Monkey On. Lily is doing really really well. SO yay! Grades are good, school environment is managed. She loves singing and dancing with PACK.  She recently started piano lessons and may someday give Phillip a run for his money. 

Kiera Tweennuts- Keep Calm and Drama On. Kiera had straight A's last semester and made Principal's list. She loves performing. She is going through the growing pains of her age and we all feel the aftershocks- but she is a remarkable young lady and has an amazing future. 

Bella Boo broke the Nutshell- Keep Calm and Be Boo -a- rific. She is a spunky lil one. She is doing well in school and will do fabulous in school when she takes her time. Can hardly criticize her feelings of urgency- although sometimes we just need to slow down and get er done. She is in soccer and LOVES it. She also started piano and is trying to teach herself 'Let it Go' from Frozen.  Phillip may have gotten all the talent there- but she loves it which makes her a bundle of fun to watch.  She has a wisdom and empathy that really brightens my days and she often will say little things to me that break my heart and mend it all at once.  Yesterday after chemo she hugged me and told me I was really really brave and strong for going through all of it. 

Sometimes when you are cleaning house- you stop and realize how much better everything feels when it's clean. Sometimes you are exhausted from the effort and wonder if it's worth it. Sometimes you find trouble buried under the dirt. Either way- we've learned that a little routine housekeeping goes a long way for prevention.

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Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)