Mom is done with chemo!

Great news everyone!  Mom is done with Chemo, her blood counts are looking good, and everyone is in high spirits.  Here is the latest report from Dad.

I think we're done with treatment.

The results from today's blood test show Fran's white cells are in the normal range, her red cells are low but holding steady, and her platelets are on the way up. That is good news all way around. The appointments we had on the schedule next week have been canceled. The PICC line was removed.

We have an appointment to see the doc's nurse practitioner next week. I really have no idea what we'll be talking about. I'm hoping that we won't be going back there for three months or so.

There really is no test to say Fran is completely cured. The only thing which might snow a recurrence is a PET scan. When I questioned the doc about the test before leaving the last chemo session he drug his feet a couple moments before saying maybe one could be done a few months out.

Fran is back to being her normal happy self. Her energy levels are good, but her endurance is a bit low. That will come back with time. Her hair continues to fill in and lengthen; she's not far from shedding the kerchiefs she's been wearing to avoid scaring little children. The wig we bought so many months ago has never been worn. We may donate it to the Rocky Mountain Cancer Center, where her doc practices, along with a number of other head coverings we acquired along the way which simply didn't suit her.

This note will be the last one planned in this long running series. Only if something truly amazing or untoward comes up will another be sent to this group.

Thanks once again for all the healing thoughts, marrow prayers and general helping juju. They all made life easier for us both

Kudos to all!  Excellent job Mom, keeping your spirits up (including the fighting one), and kicking cancer's ass!  And Dad, caretaking is an extremely difficult job - you did great!

Thanks to everyone who sent thoughts and prayers.  They helped the whole family.  We are all hoping that that is that for the cancer treatment (I am willing to do some good luck rituals to help with this), and that everyone enjoys the best of health!  Although it has been a scary journey for everyone, I think a good thing that came from it is that it has shaken up the complacency we have in taking each other for granted.

Love to all!

Transitional

I'm in transition to the new job now.  For the last week or so I've been tracking down loose ends for the project I was on for the last year and a half.  I have one more to finish this afternoon and that should be it for me on that project.  The short term is over and I will not be working with the drama manufacturer any more.  Whew!

The new job, however, is going to be a veritable data tsunami for a while.  Luckily I am taking over duties being done by two guys who won't be leaving for a couple of months, so I have more than a week for getting turnover.  Once I get access to the key systems, I will also be taking a look to see what improvements can be made to make them easier to use and/or understand.  And, of course, I'll be documenting the snot out of everything.  People make fun of me for documenting things, but it's saved my bacon (and theirs, AHEM) enough times that I do it in every job.  (plus, if I don't organize things, I can't find anything)

I'll probably be spending a good chunk of this weekend getting things done around the house.  Small jobs have been lurking ever since the move.  I finally made some headway in my closet last weekend (and am appalled at the number of excess wire hangers in there - those are going to the dry cleaners), but the office is all stacks of stuff that need sorting and filing, and I have boxes of stuff I have been hiding in the guest room that need going through.  A lot of stuff will probably be donated or set aside for a garage sale.  I also need to find a place to stash all my art supplies.

Mom had her second consolidation round of chemo last week.  They reduced her dose since she ended up having such a hard time with the first round; she sounded good when she got home, and we'll be keeping watch on her.  I'm hoping that she will get to spend the next 3 weeks at home in really boring ruts.  She's had too much medical drama already.  Please keep sending your good thoughts!

Kent's been traveling again so things are pretty quiet.  Something has been bothering me lately and I hadn't been able to pinpoint it.  Then, I watched the Glee episode with the Gaga covers, and I think I figured it out.  My freak flag has not been flying.  I haven't figured out yet what to do about this, but stay tuned - some changes are coming soon.  Any suggestions, leave them in the comments!

brain dump

There is entirely too much going on.  Check it.

WEDDING
The wedding is now less than three weeks away.  I should be wearing my shoes right now to get them broken in, but am still holed up on the couch (see "sick", below).  There are a lot of things that need doing. 

• I need to choose specifically which flowers to use in decor. 
• I need to pester people who have not RSVP'd, including people who did RSVP but didn't put their names on the card or a return address on the envelope.  Ah the mysteries.  In some cases the postmark (or lack of) is the only clue.
• I need to get the ceremony details worked out. 
• I need a final count for the caterer which will also create final layouts and plans. 
• I need to contact the caterer about borrowing or renting a couple of additional items. 
• I need to see who we can get for videography.
• I need to work out logistics plans to schedule which family members will be at the house when.
• I need to figure out what things I am forgetting I need to do.
• I need a valium.

I met with the planners on Thursday night and actually am a little more freaked out about details than I was.  Kent has action items that he will have to GET ON SOON. (hint hint hint)

MOM
Mom has had a week with big ups and downs and is having some odd emotional reactions (bad, dark-side ones, even to good news).    Her immunity is back up to acceptable levels, so she can walk around, eat raw fruits and vegetables, whatever she likes.  The rash which was causing concern turns out to be most likely a drug reaction to chemotherapy (signs are good, fingers crossed just in case!).  However, when she got the news this morning that it was not a worry, and that she could eat what she wanted and go whereever she wanted and would even be leaving the hospital earlier than expected, she got really upset and anxious.  I don't get it.  Someone will have to ask her what is going on - even get her to talk to one of the in-hospital counselors if possible.  Her being constantly freaked out is confusing and upsetting to people trying to help her.

I've asked if I should go back next weekend to help get her resettled at home (I should look into tickets), but was told only to do it if all the wedding stuff is done and we are idling.  I can pretty much guarantee that I will not be idling before April or May.  We'll see.

One good thing, when I talked to Mom today she was talking about coming out for the wedding.  Yes!  I hope she can make it.

SICK
I woke up this morning with a stomach ache.  It's nothing serious (like the dramatic food poisoning so many friends have seemed to be getting lately), but it's lingered, I've wasted the whole day hanging out on the couch instead of working on the wedding.  Not good.  I'm feeling better now but need to drink some water and try and get something constructive done.

BOOKS
I just finished "Boneshaker" by Cherie Priest.  If you like steampunk, zombies, or Seattle, check it out.  I downloaded a free book, The Apothecary's Daughter", it had high reader ratings but I don't know what it's about.  We'll see.

BLOG
I just switched to the new Blogger posting and editing system.  I can now include jumps!  I'll do this in a future post and test my cliffhanger-writing skillz.  However, I haven't seen where they've hidden the spell check - so we'll see how many I've got here... later.

Quarantine! (updated)

Mom's blood counts are now crawling around on the floor. This was fully expected, but she is tired and easily overwhelmed. For a few days, she's asked to pass the word on to hold off visiting her in person. She can still take short calls and get cards, though, if you want to do it that way!

She's sleeping most of the time now. She's lost her appetite, so we're trying to think of goodies to tempt her with. She can only eat approved foods from the hospital (a side effect of low blood counts is she has to be very strict with food safety), but we're trying to encourage her to eat whatever sounds good. She'll need more protein as her blood starts to build back up, but for now we're just trying to get some calories in there. Fortunately she was eating really well last week, so a day or two of low intake shouldn't hurt too much.

A couple of friends have suggested that she can now get, shall we say, appetite-enhancing drugs (cough-THC-cough) but I can't think of how we might convince her that this is a good idea. That they are available in caramel cube form may help, though!

So, mom doesn't have any fevers or anything, and is doing as well as could be expected, and is in good hands. So we just need to wait for her blood generators to start turning back on and doing their job.

Watch for more updates soon. If you have any suggestions for tempting someone without an appetite to eat, leave them in the comments!

***UPDATE
Got an email from dad that mom started getting a fever last night (Monday). It's not high (101F), and she's started on antibiotics, and they're doing tests to focus the treatment more on whatever's trying to make an inroad, but results won't be ready until later today (Tuesday). Hopefully mom keeps calm and keeps sleeping and eating. Will post more soon.

Welcome to mom updates

Hi there, new readers! I've been posting on mom's fight against leukemia here, and I'll be keeping a separate tag for those searching for those posts. If you want to read the whole blog and my full line of chitchat, come to Miss Interpretation. If you are only interested in reading about mom's updates, you can use this URL (and mark it as a favorite):
http://derende.blogspot.com/search/label/mom%27s%20health

UPDATE: I've also added a widget here so you can email the blog entries if you want to. See at the bottom of the post - look for the envelope.

I'll try to keep from mixing subjects too much in the entries. That makes for confusing reading, anyway.

So, it turns out that mom had a rough day yesterday. Her blood counts finally took a dive and she started feeling bad, and in conjunction with that started feeling really anxious. The staff were trying to get her to take a low-dose Valium to help, but she refused because she doesn't want to get addicted to Valium. I think she must have read "Valley of the Dolls" at an impressionable age. So, we're encouraging her to reconsider, since it may work better than the anti-anxiety medication she was getting. It's "mother's little helper" for a reason!

My main concern at the moment is getting her anxiety level down. It's burning up energy she needs for other things, and high anxiety and nausea will just keep building each other up. I heard she was better by last night and hope that she's doing even better today. Hopefully she'll get a hold of the priest she's been looking for, too, which should help more.

Hopefully they are also realizing that sending six people into the room to dump a lot of information on her at one time is exacerbating the situation. Stop that!

I'll be checking in with them later today to see how things are going. She has today and tomorrow-day left to go on chemo (should be done by the evening), and then she'll be in recovery. The next 5-8 days or so are going to be touchy due to her low immunity (and feeling low energy and probably sore), but she'll be closely monitored. 22 days until she goes home (estimated).

Keep the good thoughts coming!

Mom update and Living Wills

I've been in touch with mom and dad since coming home. Mom is doing surprisingly well with the chemo. In fact, it's turning out that she's far stronger than expected - her blood counts are not dropping as the doctor expected them to. In fact, a couple have gone up! I'm sure the doctor is consulting with other hematologists and oncologists, but from what I hear the chemo will still be wrapped up after the 7 days. She only has two days to go, then will be starting the recovery phase.

One of the things mom got at the hospital was a booklet called "Five Wishes" (wiki article here) (pdf here). All patients at the hospital get this, so it's not a function of the health problem or prognosis. It's essentially a living will, which outlines your healthcare wishes and selects healthcare power of attorney (it's legal in about 20 states if signed and witnessed correctly). Mom and Dad are working on them now, one for each of them, and are finding it upsetting.

Personally, I think everyone should have something like this done, just in case, regardless of age or health. I had to do this when I did my living trust in 2003 (the living will is part of the trust). It was upsetting to think about these things happening, especially the conditions under which I'd want to have them withhold life support, but I found that I felt better once I had everything I wanted in writing, so people didn't have to guess or worry about what to do if something happened to me.

I have to update my living trust this spring (another side effect of getting married, although there are items in there which need updating anyway), so I'll be reviewing my living will to see if I want to change anything. I'm also going to have Kent go through the Five Wishes so he can do his living trust.

If any of you would like mom's contact information to send a card or note or something (please note, flowers are not allowed), let me know and I'll get it to you. She definitely perks up when chatting on the phone or with visitors, too (although not many at a time), so if you're inclined, consider it! Dad is also going through a rough time, so giving him a call is good, too.

Everyone keep sending healing thoughts! I posted the list on her bulletin board of people I knew of who were sending mom thoughts and prayers and meditating for her - hopefully when she sees all the people pulling for her, it helps. I think the visualization of the chemo as little Rambos going after the cancer cells also helps - plus, it makes me smile to think of a molecule with itty bitty headband and machine gun, screaming and going after a hidden foxhole of blast cells.

Coming Back Out

OK, this time I have a really good reason for being out of sight for a while. We've been blindsided! I was on my way to meet with my caterer last week and got a call from mom and dad right before I went in. They sounded off-center, and it turns out that what they thought was a minor problem for mom had just been diagnosed as leukemia.

You want something to snap your other problems into proper perspective, that is one way.

So, the last week and a half has been a roller coaster, but not the good kind. I'm learning all kinds of things that I really would have been OK not knowing. If you're ever in the position of getting this kind of news, let me warn you that going onto Google at 10 pm to look up the condition is a TERRIBLE idea, especially if you're alone in the house. This was all before some follow up tests, so I've been having trouble not getting ahead of myself.

With the follow up tests, it turns out that mom is in just about the best possible position for leukemia - it's localized, with none in her marrow, blood, or spinal fluid samples. She's still going to be in the hospital for a month. This is due to the treatment plan, where she will get chemotherapy for seven days in a row, to knock out all her white blood cells (unfortunately the healthy ones are taken out in addition to the malignant ones). When they're gone, she'll be very susceptible to infections, so she'll be under observation and kept on a safer floor.

Mom started chemo yesterday - we got to the hospital at 8 am, checked in, got to her room, had her central line put in, a heart exam, and started chemo in the afternoon. The schedules kept getting moved around, which didn't help mom's feelings of anxiety and being overwhelmed, so we did our best to keep her engaged and not worrying about everything at once. I think she hit a real wall of "too much" when the nurse was showing us the chemotherapy schedule, since there were so many drugs on the list. She's been joking that she's going to walk out, but I hope that she keeps in mind that this is better than the alternative.

We were thrilled when she turned out to have essentially no side effects from the first round of chemo drugs. She is in better spirits today, even sounding cheerful, and we are trying to get more visitors to come by. She's worried about feeling sicker, but as long as we encourage her and make sure she's as protected as possible from infections and also encourage her to eat whatever she wants, I think she's in a great position to get through it really well. We'll have to also make sure that she doesn't try to be too much of a good patient - that she should let the staff know ASAP if she starts feeling uncomfortable in any way, so they can make any necessary corrections early.

Here's a new thing I learned: once your white blood cell count gets below a certain level, you have to follow the same food safety rules as you do when you travel (no raw foods except for fruit you can peel (banana, orange), foods need to be well cooked and kept hot, etc). Huh.

I'll be going back to SF on Monday, about the same time they're expecting mom to start feeling tired and flu-y. Hopefully I can help out enough before then that they can focus on mom's treatment and recovery. I can come back out in a couple of weeks if they want or need me.

Mom will be getting a haircut tomorrow. I should warn her in advance of hair trauma, but at least it will be easier when it's cut than if her shoulder length hair was coming out from the chemo.

We're doing all we can to make sure she's comfortable and upbeat. However, she finds a lot of help in knowing that people are pulling for her, thinking about her, and praying for her. If you have any messages you'd like to pass on to her, feel free to leave a comment and I'll pass the messages on.

27 days to go before she goes home!

The wedding is still going ahead as planned for now!