5/25/16

From Jan:

Today I'm doing amazing considering I'm in my three predicted low days.  I give credit to that to the IV fluids and to knowing what not to do from last months experience.

Yesterday I woke up weak and shaking and feeling "off."  I hooked up the home IV drip that is attached to a backpack, and tried to drink lots of water.  It was a tough day till around 3pm when all the fluids started kicking in.  Drinking Gatoraid helped with electrolytes so I'm drinking that instead of so much water today.  

It has been suggested to me that in all our efforts to keep me from getting sick from visitors, I have robbed my friends and loved ones from feeling like they can contact me or do something for me that I need.  When this whole situation began, I was getting a lot of calls and texts, but was in lots of pain and distress so I couldn't deal with anything more than family.  But this second round of chemo is going better.  So new rules.

So...I'm happy to have visitors who haven't had colds or been exposed to something. Bring a sports drink that has electrolytes- I'm out of Gatoraid (hint) and need more, or you can bring a protein drink from the Protein Foundary (tell them to replace the whey protein with plant protein.). Call first, so I can confirm I'm still felling good, but I really look forward to seeing people.

I am eating small meals of protein per dr orders.  I could use meals along those lines.  We were thinking about ordering Cafe Ganesh Indian food for dinner tonight, and my sweet friend Devi is bringing enchiladas Friday night, but it's nice not to think about what I'm up to fixing for meals.  Please remember I'm extremely allergic to milk, so no products that have milk or cream - no cream based soups, sour cream etc.  

My sister-in-law is here babysitting me till Friday (also doctors orders that I'm not alone), so she is making sure I eat and that visitors use hand sanitizer.  I'm in pj's today but I'd love to have a visitor or two to break up our boredom of television all day, so if you're ok with me dressed casually please call or text.


Love, Jan

5/19/16

From Jan:

Well live felt great up until about an hour ago (5 pm). I've been out of bed both days, walked the hall, been the model patient for my nurses, and just felt like a normal person.  Yay!

But I started feeling fatigued about an hour ago.  When I say fatigued, it's more than tired or sleepy, it's like you're going to fall over where ever you happen to be standing or sitting, and you'll be dead asleep in less than a minute.

But I can't lay down yet because I need to stay awake until one of the many medications they've given me wear off.  Luckily it should wear off by 7.  I remind myself of a baby kitten who falls asleep in its food bowl - exactly like that.

Yesterday the oncologist and pharmacist took pity on my situation and now my 24 hour chemo drip bags are being run over 23 hours instead.  In theory that takes an hour off each day, which meant I'd be released close to 3:30 on Saturday.  But I wasn't taking into the account that it takes 30 minutes work on the nurse's part to change the bags.  Then on top of that my doctor ordered an additional long term anti nausea med to drip for 30 minutes between chemo bags today, so that meant that I didn't gain any time today.  We'll have to see how Friday's bag change goes to get a better idea what time I will get released on Saturday.  Plus after the pink chemo bag they'll hang one clear chemo bag Saturday that either takes a half or full hour, I can't remember.  Jill (my sister) was. Joking with my nurse last night about how she would bring a prize. (Ruby Snap Cookies) to whatever nurse changed the bags fastest.  I think the nurse at discharge gets double points if she immediately unhooks me from the IV instead of making me wait 20 minutes like last time.  I become totally unreasonable. When it's discharge time and I'm not my normal sweet understanding self.  I want out of here the second the last drop of chemo drips!

Oh and if I understand correctly, instead of sending me home with an IV pole, the IV will be in a pump I wear like a fanny pack! (I have to have an IV drip 10 hours of each 24 hour day at home to keep me from getting as sick as last time.) So a home health nurse will come by with 12 IV bags and will teach me how to change the bags myself.

They're rally invested in having me not get sick and land back in the hospital, so besides the long term nausea drug I got today, and sending me home with the IV pump, they have called in additional drugs to take at home. In all there will be 3 nausea drugs, two of which I'll take alternatively every four hours. As I understand, all 3 of these anti nausea medications work on different channels so you can take all 3 and not worry about over medicating because they all target something different.

So besides their regime, I now know I need to force myself to eat several small meals a day, and drink a lot of water and get up and walk for 15 minutes when I'm fatigued.  So with all that I'm expecting a better outcome.  And I plan to return to work the week of May 30- June 3rd.  It's the week right before I start my 3rd chemo session, do I'm looking forward to seeing how that goes, and it's extra motivation to do everything right this time to prevent setbacks.




Thanks again for all the continued prayers on Jan and the family's behalf!

5/18/16

Update from Jan:

Yesterday I did my outpatient Retuxin at Utah Cancer Specialists.  The first time I had it, I was on my loopy drugs, so all I did was sleep and have weird dreams.  But yesterday I realized the first half hour they run benedryl and another drug first.  It made me so sleepy I could barely stay awake.  A former co- worker and friend, Kimmi Shaw had talked to Kaitlyn and Kaitlyn encouraged her to come keep me company but by the time she got there I could barely keep my eyes open.  So she sat and mostly watched me sleep for 2 of the 3 hours she was there.  By the time the drip was done the benedryl had worn off and I was fully awake. I realized I could definitely drive myself there and home next time.  But Kimmi drove me to the hospital for quick blood work and then dropped me off at home around 3:30.  

Today I woke up feeling a little sick from the Retuxin.  I was to report to the hospital at 8 am, then be taken directly down for the spinal fluid chemo directly after.  However there was a mixup and the hospital didn't get the order so they had to squeeze me in later, which ended up being at 3 pm for the spinal fluid chemo.  And I couldn't start the pink chemo until after the spinal fluid chemo because of the radiation they use to direct the needle into my spine.  So, I was here at 8am but didn't start the pink chemo until 5:30pm. Frustrating!  Which means I won't be released until after 6pm on Saturday.

Right now I'm not up for visitors because I'm fighting nausea and can't regulate my internal temp.  I'm either cold or hot - but my temperature always shows 98.6 so it's just me.  Oh, and the head nurse  from last time is here, so no flowers. Ha ha. 

5/14/16- Getting ready for round 2

Jan is getting ready for her second round of chemo which will begin Monday with a few hours of outpatient chemo at Utah Cancer Center. 

Tuesday, she will check back into the hospital and get her hard core pink chemo. She should be back home by the weekend.

As usually she can get visitors IF they are not sick, and have not been around sick people. Please check in ahead of time to make plans to visit instead of dropping by. This time around she is planning on getting lots and lots of rest so again, if she says it's not a great time or great day, its not you. She's just really trying to avoid any unnecessary hospital stays.

Thanks again for all the continued prayers on Jan's behalf, she is not looking forward to this next round but hopefully things go well and she might not have to be hospitalized for the rest of the rounds after this. Fingers crossed!!

5/6/16 - Some optimism for your Friday

Jan had a chance to meet with her oncologist at Utah Cancer Center and have a lot of things clarified and lots of questions answered.

It was all good news.

First of all, it was the head nurse at IMC that gave Jan a stern talking to and confiscated her flowers, not an oncologist like I originally thought.

Also, it turns out that same head nurse was incredibly wrong on a lot of things:

1st - Jan was told that she wasn't tolerating chemo.  This is incorrect.  What happened was, Jan's cancer was advanced and going into chemo she was already a very sick woman with tumors pressing up against her organs.  Keeping that in mind, the first round of chemo is always the hardest and with the amount of cancer she has to fight - it made her incredibly ill.

Her oncologist was surprised the hospital hadn't gone over her latest scan with her, because it turns out - it had good news.

Yes - you read that right - good news.

This 3rd CT scan was compared to her first at her initial diagnosis done on March 31st, normally it is way to soon to see any changes but, her tumors are already shrinking.  This is very unusual.  Her largest tumor was 20 mm and it is now 10 mm.  Several others have decreased in size while others haven't changed, but the fact that they are already seeing progress is unusual and very good.

Since Jan had been told that she hadn't been tolerating the chemo and she had been so incredibly sick and in so much pain, she was considering discontinuing the chemo and spending whatever time she had left with family.  Her oncologist, Dr. Gregg reassured her that she has now been through the hardest part and while she wanted Jan to go back in this Sunday for another round of chemo, Jan bargained for a few more days to recover before she has to go back in. She just wants to be able to stand for 10 minutes without shaking from exhaustion, to be able to shower without requiring a 20 minute nap to recover, etc.

Round 2 will start May 16th with outpatient chemo at Utah Cancer Specialists where she'll get 4-6 hours of Retuxin, which really isn't chemo but it's how all chemo starts. Retuxin, as it was explained to us, can isolate cancer cells and kill them.  In simple terms, when cancer cells are killed off, it gives off a poisonous gas that can hurt the liver and kidneys and really make you sick.  So it is only done one day where nurses can monitor you.  Then after that, days 2-6 she gets the dreaded Pink Chemo in the hospital, which is called E-POX.  Most people get a variation of chemo called R-CHOP which is a one day regime, but since Jan's is double hit - she gets 5 days of the big guns.

Jan will get out of the hospital May 21st.  Dr. Gregg said she wanted someone to stay with Jan for the following 8-10 days depending on how she's doing.  Days 10-14 are when her blood counts are the worst and she'll be the sickest, during those days Jan's sister-in-law, sister and daughter Kaitlyn will help, and she will have friends fill in as needed.

Jan was told that if she does well with round 2, that round 3 might be able to be done as out-patient and she'd be able to avoid the hospital and go home every night and sleep in her own bed.  So Jan is holding onto the hope that this next round will be her last hospital stay.  So she's asking for prayers because she hates the hospital.

Here are some other questions she had answered:

1.  Some people asked if she could be prescribed medical marijuana.  She can't.  It is illegal in the state of Utah.  However, there are plenty of legal meds that will work better for Jan's case.
2.  The tingling in her fingertips is called Neuropathy.  They always hope to give just enough chemo to avoid it so they'll adjust her chemo to see if they can avoid it in the future.  So she should be getting feeling back in her fingertips soon.
3.  The tumors pressing on her stomach and intestines were the culprits behind her last 4 day hospital stay.  Now that they've shrunk, there isn't as much pressure and she should do much better.  As long as she's following the instruction of eating 6-8 small half-cup meals a day to keep her stomach from getting pressure.
4.  Her trembling hands are a result of being weak so she needs to work on getting better and stronger.
5.  Dr. Gregg said that she could have had flowers and visitors and was incredulous at what Jan had been told by the nursing staff.  We had all questioned the flowers but figured they knew what they were talking about.  It turns out, they don't.  She'll get her blood taken once a week and as long as her blood counts are normal, she can have visitors - within reason - *SEE BELOW FOR DETAILS!!
6.  Other mis-information she got was that she would have to wash her clothes in boiling water because chemo would come out in her sweat.  Dr. Gregg said she had never heard that...ever.  And in so many kind words said that was...dumb.
7.  She is not cleared to go back to work until after she sails through round 2 and does well.  Once she's cleared by her doctor, she can begin to work half-days - so she is asking for prayers that round 2 goes well so she can return to Keller Williams.
8.  She still can't attend church because too many sick people attend church.


**DETAILS ON VISITORS:

Now that Jan has been told she can have visitors this does not mean party at Jan's house.  She is still really weak and really needs to build up her endurance, her strength and her ability to fight again.  She gets exhausted after sitting up for a while - she gets tired after doing small tasks.  So her main focus up until she starts her next round is to focus on recovery.

So while we are still astounded by people's generosity and offers of visits and help - we're asking that you call before you make plans to see her.

Also if you have been sick, or have been around sick people to hold off making plans to visit.  For example - Jan's son Brandon has been in town but he and his family have been sick so he hasn't been able to go see her and their kids haven't been able to see Grandma.  It's heartbreaking and all parties wanna bend the rules a little, but they simply can't because a small cold isn't going to help Jan recover.  So please keep this in mind if you want to make plans to visit.

Also, please don't be offended if you try to make plans to see Jan and she says its not a good time or a good day.  She is recovering from being seriously ill and tires incredibly easily.  Her goals are to climb her stairs without needing a break before taking on the last two steps and to not need a nap after she showers.  So again we'll stress that drop-ins aren't really encouraged and hope that you'll understand!

She has some physical therapy appointments coming up and has some homework of taking small walks to build her strength.  She does miss her work friends and might make plans to have some people come walk with her so she can catch up on what she's missing.

Once again we can't begin to tell you how grateful we are for everyone's continued prayers. We can all definitely see the effect!

5/2/16 - No, really - No visitors.

While Jan is home, she cannot have visitors.

We repeat: no visitors.

This is for her health. While she was in the hospital she had a stern talking to from her oncologist when she found it she had guests. She also confiscated her flowers because even flowers can make her sick.

Seriously.

So while Jan appreciates the offers to come drop by for some company, her immune system is so weak that she can't risk it. Even if you're not sick, you could still be carrying a bug so her doctors aren't taking chances.  She asked if it would be ok if she wore a mask and that idea was shot down.

We don't want to sound harsh, the offers for help have been so sweet and our family is so grateful for people's overwhelming generosity and concern, but right now we need to obey doctors orders. If she got even a small cold right now it would really set her back.

The hard news right now is, Jan isn't tolerating the chemo. She was scheduled to go back in for another round on Mother's Day but that was quickly cancelled because she needs at least another week to recover after what her body has been through.
Jan has an appointment with her oncologist this week to discuss what her options are and how to proceed since she's not tolerating the chemo. There are some tough decisions ahead and we really appreciate your continued prayers. We should know more by Friday what her next step will be.

The question we all keep getting is how can you help. Right now we don't know. While she's regaining her strength , she has had help from family and she's pretty set right now, but as things progress we'll let you know.

Jan got her wig and was told that she has a beautiful head, which is...nice? She is set with head wraps too.

Also her fingers are tingly enough that she can't really text back without it being a mess that even auto correct can't help, so try to email instead of texting if you can.

With Jan recovering, her exhaustion has her going to bed for the night around 7pm. So if you could refrain from calling, texting, ringing the doorbell, knocking, etc. she really is fine, she's just tired. She promises.


Thanks again for your kind words and concern, it's amazing to see how many people truly love Jan and want to help.