The saga continues... Input appreciated (Also: long)

8junebugs · New User Joined: 19 May 2008 Posts: 4

Caveat #1: I'm a writer. You'll have to excuse how I tend to run off at the mouth/keyboard. Some family members read my blog (**see profile**, if you're interested) and I'm getting more cautious.

Caveat #2: I'm REALLY direct.

First, I want to thank those of you who responded to my initial post. I greatly appreciate hearing about your experiences, and I feel validated reading what you written.

Radiation was very effective -- the immediate threat to her life has been addressed and she is able to breathe more freely. Her only real pain still comes from the rib that broke from excessive coughing and has not completely healed...because of continuing coughing.

My mother responded very positively to the chemo doctor. He has a manner she likes, and that goes a LONG way with my mom. I have spoken with him and like him as well, but I can tell from his manner that he does try to be positive. This -- and I hate to put a negative spin on a positive outlook -- makes it easier for my mom to ignore the facts, although she says she is now more realistic.

He did say "You know this is terminal, right?" to both of us. But my mom is one who can hear that, turn around, and say "But maybe..."

And I do believe in miracles. I know one -- a dear friend's father has beat his prognosis from a very ugly cancer that showed characteristics of lymphoma and myeloma (I feel sure I mispelled that one) and led to every treatment option I've ever heard of. But that cancer has recently resurfaced, and I am overly reliant on signs and portents.

There is good news: They scanned the rest of Mom's body and there is no cancer evident in her bones or brain.

Hooray!

There is bad news: Although the main tumor shrank dramatically, the cancer in her liver, during that time and to quote ChemoDoc, got "impressively worse." So they sped up the chemo plan and she was treated almost a week early with a more potent cocktail than planned.

I know about the liver met increase because I talked to ChemoDoc. Mom's version was that they wanted to dovetail on the success of the radiation.

About four days later, she went in for the second drip with only one drug (as opposed to three the first day) and they booted her after 10 minutes because her platelets tanked. She went from averages between 149K and 155K to 37K.

This was alarming. Also alarming is that they did not warn her about the bleeding danger of losing platelets; she's a cosmetologist, for crying out loud, and keeps the Band-Aid brand in business. (She has nerve damage from way back in three fingers and wouldn't know she'd clipped those three until she turned some elderly lady's hair pink.)

They drew blood two days later and she was up to 62K. Today, after three days to replenish, she was only up to 75Kish. They're giving her another day and a half to try to get up to 90K on her own before talking transfusion.

I do not know what to expect. I am afraid because a work friend whose mother was diagnosed shortly after Mom with all kind of cancer-related problems died last week, six weeks to the day from her diagnosis. And her downward spiral started in this same vein.

I am still in DC, but I am heading up to Vermont as soon as July 4th, if not earlier, for a week or so. Work is uncooperative but I am coping. I will use up my vacation time and sprinkle in as FMLA leave as I can afford.

I'm doing the best I can.

I have also lied to my mother, who, after saying she'd read her file and is aware of the gravity of the situation, also said she's going to "do what she can and wait for grandchildren."

My friends, the onus is on me, there. There's the fact that my brother can barely support himself, and also the fact that she said, "I don't mean him."

No pressure.

Here is my situation: Before the diagnosis, I (finally) initiated a divorce from an emotionally abusive and developmentally stunted husband. Shortly after that, the love of my life, whom I had left because I was uncertain of the future and he didn't want to talk about it, reached out. We have been in close contact ever since and have managed a visit. It's an awkward time, but we are not new to each other and never stopped being in love in spite of seven years apart. He has been a rock for me throughout this journey, often reminding me that Mom has to be my first priority right now...the support from him has been so different from my future ex-husband's as to be laughable, had I not made the mistake of marrying the bastard.

Our story is a long one, but the short end is that we've each been kicked around individually and are very happy to be together again, albeit over a long distance; he is in the Sacramento area and I, as I've mentioned, am not. We have done the long-distance thing before, though, and I know that there are three things impeding our eventual proximity: Mom's cancer, my lease, and my need to appear in court for my divorce in October.

Mom has been thrilled about all of this, by the way. This is my high school sweetheart, my first adult love, and she is happy to see me happy again and back to being myself. She L-O-V-E-S him for making me so happy in spite of all the crap going on.

But.

Divorcing my husband meant probably postponing kids for longer than I'd hoped. And I told her that when she mentioned grandchildren. My, er...whatever he is (boyfriend hasn't fit since high school), who faced breast cancer with his mom in the 80s, told me to go ahead and lie to her and say that, hey, if we can time another visit right, maybe she'll get a grandkid before 2010. His theory was that miracles don't happen for those who don't fight, so just keep her fighting as long as we can.

Because, here's the thing. I am not the type to have a kid because my mom wants to see a grandchild. But if I get pregnant during one of our visits, neither of us would have a problem with it...in fact, I'd be ecstatic (he is less able to support a kid right now, but I'd be fine as a single mom for a bit). I can pretty much guarantee that, should she stick around a couple more years, this man will be the father of her grandchildren. (This isn't even our honeymoon period, folks -- we've had to resolve some issues from way back and it hasn't been easy. But there isn't much true love can't overcome, is there? Especially when you've loved someone for about half your life.)

I balked at lying to my mother about this. I don't like lying. Period. But knowing that both of us would be okay if it turned out to be true was calming, and hearing about my work friend's mother made me say, "What the hell."

And you know, it worked. She got so very excited! She wanted to talk about baby names, and I went along with that. She told me to have a boy first because, apparently, he is prettier than I am. He is legally blind due to a genetic mutation and we talked about whether that could be passed down (I do not care, but there is a chance).

So I have two questions:

1. What can you tell me about platelets from your experience? I won't hear back from the doctor until at least tomorrow night.

2. Have any of you either fulfilled a dying wish for your loved one or said you were working on it to keep them fighting? (I've read enough to know you won't judge, but I'm curious, now.)

I am off to call my best friend and ask after her dad, who helped me move, cried at her wedding, and dumped a cooler of ice over one of our friends. This man is very dear to me, and I am SO VERY MAD that his cancer is back.

simplyklb

Hi,
Both my parents have lung cancer.. My dad has SCLC and my mom has NSCLC. My dad had a platelet transfusion back on Fri., June 6th because his platelets were critically low. He had a platelet count of 5,000. At the time, his WBC (white blood cell) count was 0.1. He was at a high risk for bleeding. That Sat., he took a fall outside. I was sooo nervous because he was sooo neuropenic and his platelets were so low. The following Monday he went back to the oncologist.. His platelets were 48,000 and his WBC count was 0.7. The following Friday, his platelets were 98,000 and his WBC was 1.5. On Mon., JKune 16th, his platelets were 292,000 and his WBC was 3.8. Those counts were after 10 radiation treatments ending on May 21st and one round of chemo. He goes back tomorrow for a follow-up with the oncologist. I will be anxious to see where his counts are after his second round of chemo. He is due for scans.

Kristi
_________________
Dad - Andy, 70, diagnosed with SCLC in May 2008
Mom - Jackie, 67, diagnosed with NSCLC in May 2008

pbj11 · Site Admin Joined: 12 May 2007 Posts: 822

Hi Junebugs,

First -- just so you are not offended, it is the forum's policy to not allow website postings until a member has 10 substantive posts under their belts. You can go to your profile and add the website there -- why that is, I don't know, but please don't shoot the messenger woman. (Me.) I've already made the adjustment to your post to see your profile for the blog. Our Administrator in chief is gone for a few days, so there are less of us peddling as fast as we can to keep up with chores around here.

Kristi gave great first hand information on platelets. We never encountered that problem, but my Mother did years ago and she had a lot of platelet transfusions and was able to continue receiving chemo on a regular basis. Some people's counts get hit harder by chemo than others and there is no rhyme or reason to it.

I'm glad they are moving back into the chemo regimen quickly to combat the liver mets. Great news on the rest of the body scan. Congratulations.

As far as what to tell your Mom? I really can't advise, but I don't think not having a grandchild will affect the outcome for her one way or another. Positive attitudes are a great way to approach this type of diagnosis, but studies have shown that they don't really factor into the outcomes. I'm not sure how they measure that, but it's what I've read. (Of course tomorrow they will come out with another study saying the opposite! Rolling Eyes

) Better to be upbeat though than to drag and mope your life away.

I'm one of those mothers who tell my kids that I'm not "one of those mother's" who push for grandchildren. My personal feeling is that it is unfair to place pressure on your kids. If I have them - fine, if not- that's fine too. It's not up to me as it is their lives.

I would hesitate leading your Mom down the garden path though and you do say you are a direct person. Again, it's a personal choice what you want to tell your Mom.

I am glad you are finding happiness in your life again after living under such a stressful situation.

Good luck and please keep us posted as to your Mom's progress. (I'm also terribly curious how you handle this whole baby thing. Sorry! This is a first for me to read something of this nature. Wink

)

God bless and best wishes,
PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

8junebugs · New User Joined: 19 May 2008 Posts: 4

Thank you to Kristi for the firsthand report -- that helped. I don't know what Mom's WBC is, but I will ask the doctor when we talk.

Also, you have my sympathies. I can't imagine facing this kind of thing for both parents. I wish all of you the very best.

I do apologize for the URL posting -- I forgot about the 10-posting rule. Thank you, pbj, for explaining instead of just deleting. Smile

Mom had actually been pretty good in the "I want grandchildren" department up to this point, possibly because she knew I was unhappy and knew it would have been bad to bring a kid into that marriage. That she started pushing *after* I signed my separation agreement (the Commonwealth of VA has very...colonial rules about these things, and we can't file until October) was a little absurd, and would have been amusing, but for the reason.

I think I'm justifying "The Lie" to myself with the knowledge that yes, this is the relationship I want; yes, we're headed in that general direction; and yes, she already knows we have a 2010 timeline in mind for a kid. (Because we've talked about all of this already...like I said, we're not new to each other.) But I think 2010 sounds pretty far away when you're sitting through chemo, so we wanted to give her a little hope and something positive to think about.

Of course, now she's going to tell the whole county where I grew up that I'm going to get knocked up before my divorce is final. That should make my next visit interesting. (It's a very small county.)

simplyklb

WBC - White blood cell. The less number of WBC in your body, the less able you are to fight off infection. When the white blood cells are low (especially under 1), some precautions should be taken. For instance, if someone is sick, I wouldn't allow that person inside the home.

Kristi
_________________
Dad - Andy, 70, diagnosed with SCLC in May 2008
Mom - Jackie, 67, diagnosed with NSCLC in May 2008

8junebugs · New User Joined: 19 May 2008 Posts: 4

Sorry -- should have been clearer. I know what WBC means...I just don't know Mom's count yet.

Thanks!

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