Friday, April 29th, 2005
Cancer, Baby has just received devastating news that her cancer has returned. Please send her all your love and support. It will mean so much, even if you don’t think it will make a different. Trust me, it does.
I have been meaning to put this “Family & Friends Guide” in writing for some time. Here it is. Keep in mind this is from MY OWN experience only and I do NOT represent the whole community of cancer survivors and their views.
What You Should Do
* Call / email / write and express your love and support explicitly. Say things such as “I’m sorry” “I’m here for you if you need to talk or cry, or just someone to yell at” etc.
* Offer help. “What can I do for you (name specific things) — bring dinner, do laundry, grocery shop, etc” and ask what sort of food they preferred. A vague “Let me know if there’s anything I can do” is well intended but not very helpful, because there is certainly something that you can do for him/her.
* Do follow through with your offers.
* Call / email at least once a week to say “Hi, how are you doing?” “I’m thinking of you” etc.
* Send cards / flowers / care packages / books / videos, whatever is more fitting for the person. If they are extremely ill as a result of chemotherapy / radiation, it is best NOT to send fresh flowers, as that may cause some set back in some.
* Visit him/her whenever possible / when immune system is on the rebound in between treatments (do NOT visit when you have a flu / cold / whatever).
* Donate blood / plasma.
* Sign up for bone marrow testing and/or donation.
Remember, a day in a cancer patient’s life is VERY long. So extra TLC (tender loving care) is needed. And frequent gestures of reminders that they are loved and cared is very beneficial and goes a long way.
Healing the physical body is the easier part, healing the soul/spirit/emotional being is much harder and takes much more time, care, and love. And that’s where you, friends and family play the biggest roles.
What You Should NOT Do
* Do not say “my grandfather’s friend’s boss’s wife’s cousin had cancer and they are fine now”, because think about how is THAT a helpful thing for your loved one to hear?!
* Do not avoid him/her. Cancer is not contagious.
* Do not say “god does not give us more than we can handle” or something similar. Although this depends on the person’s religious views, but it is highly likely that s/he is very upset at god right now.
* Do not dismiss his/her angry / bitter / cynical feelings. Just listen and do not give advice.
* Do not tell them “be positive, you won’t get better if you’re angry/bitter all the time.” After all, no one, NO ONE including yourself is positive, cheery, and happy go lucky all the time.
* Do not say “you’re so strong/brave” “This will make you a stronger person” …
* Do not say “you’re so young, age is on your side” no matter how true that is.
* Do not say “I know how you feel” unless you have had cancer, even then, you DON’T know how s/he feels precisely…
* Do not compare this tragic situation/diagnose to something of your own / do not compare pain.
* Do not assume things. Ask. And ask specific/explicit questions.
I’m sure there’s more, but this is what I can come up with at the moment.
Thursday, April 28th, 2005
I keep mulling over one of Mare’s recent post.
Generally speaking, people don’t want to know about your problems. Or rather, they don’t really care about it. At all. Their world revolves around themselves and their “stuff”, not “your stuff”. No matter how painful it is to you, to them, it’s yours and yours alone. Not theirs. It’s a sad truth that everyone has experienced at least once, let it be relationship problems, familial issues, or health / medical complications. The listener’s eyes just sort of glazes over, looking past your shoulder and wondering when you will stop torturing them so that they can go back to their own problems. And if you insist on involving them in your issues, they soon learn ways to avoid you, perhaps even cutting you off completely from their life. Why should they waste their precious time and energy to give it a second thought. After all, it’s YOUR problem.
Well damn it, because we’re suppose to be friends and you should care about the plights your friends are encountering. What’s more, you should be there for them, to lend an ear, a shoulder, or just to hold their hands through it. Even if you cannot begin to comprehend the complexities of the situation and really don’t want to know all the gory details. Even if you think it’s a non-issue to you. It is obviously an issue to your friend if it upsets him/her so much that they feel the need to unload and share with you. That’s what friends do. They are there for each other through good times and bad times.
I have had some very personal experiences with this and am still struggling to come to peace with my own feelings.
After being diagnosed with lymphoma when I just turned a tender 24, I (we) were devastated. I cannot describe the despair, pain, loneliness, and a whole range of other emotions in words. I was literally in pieces, to be mended only by time and love.
I withdrew from everyone for about a month after diagnose. I couldn’t bare to tell the story over and over; I did not have enough tears for that. But after that initial withdrawal, I reached out for the help and support that I needed so much. I also composed a bunch of email addresses that I would use to send out bimonthly updates, as my chemotherapy was every 2 weeks. I wanted everyone to know the latest happenings and this was easiest to do (perhaps I should have started blogging then?)
In the entire 10 months of treatment, I received a couple of care-packages, less than a dozen phone calls, a total of two visits — by two different people, and about two dozen or so total email replies to my bimonthly updates. Yea. I have a lot of friends (sarcasm).
One of the two visits still taunt (haunt?) me to this day. We were sitting in the livingroom chatting about stuff - not cancer related. I then asked something that had been bugging me for a while. Why I never receive an email reply to my monthly updates from him? Did I get the email address wrong or what? The gist of his reply: “Your descriptions are too detailed and sometimes they make me sick. I cannot even read your emails, let alone reply them.”
That’s right. My emails made him sick. My medical terms were too much for him. My nausea and bedriddenness were unspeakably yucky to him and he couldn’t bare spending a few minutes of his time trying to understand all that I had to endure. Has he tried to imagine how it all makes ME feel? Hey after all, I’m going through it. You’re just reading it.
And it also prevented him from sending me any emails / making any phone calls or contacts, as if I would plague him with the cancer itself if he were to make any contacts.
But hey, at least he came to visit me. Toward the end of my radiation treatment. That has to count as something, right? Sigh.
We never talked about cancer stuff after that. Until his father was diagnosed with cancer.
Another friend… when I finally heard from him months after I reached remission, I asked why I haven’t heard from him before now. I don’t even know how to categorize his response. Our conversation was something like this:
Him: “No one in my family has ever had cancer (well, neither have mine!) and the only ones I know that had cancer died (gee thanks). I didn’t know what to say/do for you, so I didn’t say/do anything.”
Me, enraged: “What if I really did end up dying? Wouldn’t you regret for the rest of your life that you were never there for me in my darkest moments?!”
Him: “I guess so. I didn’t think about that.”
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So what was my point in writing all this cancer stuff? I don’t remember, because I have chemo brain. Oh yea, people suck. They don’t care. They don’t want to know. It’s YOUR problem. Period.
Wednesday, April 20th, 2005
I had an appointment with the OB today. Went over ultrasound (u/s) results, measurements, all that jazz. And a couple other things.
— With the u/s measurements, due date is now estimated to be September 8th, instead of September 5th. Very few babies arrive on their actual due date, so this doesn’t mean too much.
— As mentioned in the previous post, it’s probably a girl!
— Baby’s heart rate measured at 160 bpm.
— My blood pressure was 92/58. Normal range for me.
— The yeast infection that I thought I still had, lingering from way back in November, is no longer present (since week 14). He took cultures and looked under the scope, and nada. The inflammation I’m having could be due to some other thing. I am to take some antibiotic and see if that relieves it.
— I’m officially off Pelvic Rest. Guess who is very happy to hear that?!
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Knowing that it will probably be a girl, I would like to ask for name suggestions from you all!
Just a few of my preferences:
* Not one of the currently popular names.
* Something unique, but not too unique. (I do NOT think making a traditional name with mere different spelling is “unique”)
* No unisex names. Nothing against them, just I’d rather stick with girl names.
Monday, April 18th, 2005
It is simply unbelievable. 20w0d today. Exactly halfway point. Amazing. I am still absolutely positively scared, anxious, and fear of the Bad Thing That Might Happen.
The bleeding and spotting stopped around 12 weeks. I felt some fluttering at about 14 weeks, and really felt movements around 17w3d. The kungfu tournament continues, and increasing in strength by the day. I think the kid will have a Black Belt by the time s/he is born.
Up until now I have not really been able to blissfully enjoy this pregnancy. I don’t think that is possible anymore after experiences of loss. You lose the innocence and the naivety forever. You lose trust in your body and sense of control. It’s simply no rushing out to buy blue or pink immediately before your pee stick even dries up, no rushing to make calls to everyone you know in the world and shout from the rooftop too. You just kind of hide and never really get your hopes up too high, because it hurts much worse if you’re dropped from higher grounds.
When I was pregnant with our son, I took belly pictures. I think I have at least one to represent each month. I stood in front of the mirror admiring the ever growing bump, and boobs. I jumped on the scale every morning to see how much I’ve gained. Everyone knew right away that I was pregnant. I glowed immensely, the whole nine months.
I did none of that this time around. I am still sitting cautiously in the corner seat, just holding my breath, one day at a time, one minute at a time. I’m too scared that if I start to enjoy it, something bad will happen. It is very illogical, but that is the truth of how I’m feeling.
Today I had the halfway ultrasound. We have the OB visit on Wednesday to discuss any details / whatever. The tech made some comments here and there throughout the 30 minutes.. She said the baby is measuring pretty right on schedule, about 4 days later than what LMP predicts which sounds good to me as I ovulated on the 17th or 18th day. The baby is about 11 oz in weight and heart rate was 146 bpm. So it was very good to hear and much needed reassurance. I might actually start to believe I will have a little baby in my arms in another 20 more weeks.
Oh yes, she was 80% sure that it is a baby girl.
Do you think it is safe for me to exhale now?
Thursday, April 14th, 2005
** Feel free to skip if you’re not in the mood for something heavy, traumatic, and dramatic. **
Year 2000 was a great year. Except for the tiny little thing at the end leaving a very bitter and angry taste in my mouth / mind.
We bought our first (current) home that year. The same year that I graduated from college, got a real job, and got married. All within a 6-month span, in that order. Things were hectic as you can imagine. Mid-October we made an offer to buy the house and the offer was accepted. Although the house is over 40 years old, it has character and charm. It also has a lot of privacy - there is almost an acre of land in the backyard. The world is our oyster and we were very excited!
Come mid-November, we the newlyweds were all done packing our things in the apartment and ready to become home owners. We moved in on a Friday. That following Monday, I went to see the doctor. I had been having some tightening feelings in the chest and slight chest pains. She took an x-ray. She scheduled a CT scan immediately for the next day after looking at the x-ray films. The CT scan results came back that same day on Tuesday and I got a call at home. I was to go for the next available slot for a biopsy surgery. On Wednesday morning that same week. One major event after another, I hardly had time to digest it all. This was Thanksgiving Week.
I had been extremely healthy and never had any major illnesses. No one in my extended / family (nor my husband’s side) have had any illnesses either. We were both very naive, ignorant, and had been living blissfully healthy lives.
Wednesday morning, bright and early, hubby took me to the hospital and dropped me off at the out-patient surgery center and went to work. It was our one-year anniversary — civil court marriage day — a story for another day. I didn’t take the anesthesia very well. Actually, they couldn’t get the damn needle in my tiny vein. It took 4 nurses and 7 tries to finally get it in. By then, I was bawling, and no one was around to comfort me. Some time later, I had the biopsy surgery done on my neck. It took one hour or so. I was woozy. They held me for couple of hours and finally hubby came and took me home. I spent that evening and the next day in bed - Thanksgiving Day - recovering. We don’t live close to family at all, so it was just me and him.
I was sure my wound was infected. It was red and puffy, and it was still numb from the drugs, some 48 hours later. I was told the drugs would wear off after 24 hours. So we went to the surgery clinic the next day, Thanksgiving Friday to see why I was still so numb and whether its in fact an infection. Was told my surgeon was on vacation and I was to see another doctor. I mentioned my complaints to this other doctor; she looked briefly at my neck, and went to grab some papers in another room. She came back, casually said that sometimes during a surgery, a nerve or two may be damaged. And depending on a variety of reasons, it may or may not be a reversible damage. She glanced at the papers and then announced, again very casually, that I have cancer.
She said, it’s Hodgkin’s Disease. A type of Lymphoma.
I’ve never heard any of it before.
It’s cancer. I have CANCER.
My dear husband was sitting in the waiting room. I was alone. With this doctor whom I’ve never met before.
My world went black for what seemed like eternity. When I came to, I think I said something like “…OK…” I don’t remember another word she said to me after that and I don’t recall how long I was in there. I left to find my husband. I mumbled something to him and we left the clinic. We drove home in silence and shock. The next two weeks were spent crying, going for oncology appointments, tests and staging, and more crying. I couldn’t talk to anyone I knew, as it made me cry even more. I think it was at least a month before any of my friends knew.
How could this be?! I just turned 24 not long ago. Had been healthy all my life; I even ate healthy and had no drinking or smoking habits. I’m too young to have cancer. I’m too healthy to have cancer. I don’t want to die yet; my life has just started. No one in my family or extended family has ever had cancer before. Not even any major illnesses. There must be a mistake. I don’t want to die yet. The only people I know who have/had cancer are on T.V. and they usually end up dying. And they’re usually very old. Or very young. I don’t want to die. Not yet. We desperately hoped they have made a wrong diagnosis.
However, several of the classic symptoms were present. The night sweats, the itchiness, the fatigue, and the shortness of breath. Not to mention the swollen node that they took out from my neck and the big unexplained spot in my chest cavity on the x-ray. The CT scan and the gallium scan results. The bone marrow biopsy. All positive for hodgkin’s lymphoma.
The local oncologist said to us, if you were ever to have cancer, hodgkin’s lymphoma is one of the best ones to have. I did not know there was such a thing. “The best cancer.” This has to be the worst oxymoron. She said to stay on the birth control pills, as it may serve to protect my ovaries from the harsh chemo. She said there was a 5-15% chance that I could become sterile from the drug combination. We were not given any support group materials of any sort, nor any sort of financial help information. She never had an ounce of compassion in her voice. Now looking back, we were treated as a number, a statistic. People who were young and resilient who don’t need any extra help. And we didn’t know any better. We were as naive as they come.
For the next 10 months, we went in and out of hospital more times than we care to remember. But oh do I remember. The 6-month long chemotherapy kicked my butt, to the point where I wish I was actually dead. Because I had wimpy arm veins, and also because of the high toxicity of the chemo drugs, I had another surgery to insert a catheter into my chest to access a bigger vein for easier chemo delivery. To this day I have a huge scar on the top of my right boob. I lost most of my hair, and shaved what was left of it. The 2 week-long radiation therapy at Mayo Clinic following was no cake walk either, but it was much easier than chemo. I had Mantle Field radiation - an inverted Y-field from my chin to shortly below my boobs. My throat was suffering big time after just a couple of sessions. It felt as if there were razor blades in my throat. I was suffering from esophagitis, a common side affect of radiation to the throat/neck region. For weeks I could not swallow my own spit, let alone eat much of anything.
Two friends came to visit me during this whole ordeal. Two. Since we had moved in just the week prior to diagnose, the neighbors didn’t know us at all. My new coworkers did not know me very well yet at the new job. Families were thousands of miles away. My husband was right there alongside me, every single step of the way. But we felt extremely alone, fighting this battle for my life, fighting to survive.
Lucky for me, remission was declared 10 months later.
90% of our packing remained inside the boxes that were scattered throughout the house for more than a year. We had college-condition furniture for the first 2 years living in this new house. The last thing we wanted to think about was the house. The last thing I wanted to think about was sex.
Months later I was still in a daze thinking of what had happened to me, and all that I went through to get to remission. For a very long time, I couldn’t talk about it without crying. I have never cried so much in public, in front of people, and in private.
These days I don’t cry about this very much at all. Some days it feels as if it happened eons ago, other days it feels as though it just happened yesterday. And sometimes it feels as if this happened to someone else and not me. Most days I’m OK, but occasionally, I feel I need to talk to a shrink.
And the sky has been mostly blue with white clouds since then (with the exception of last October).
I am managing.
I am surviving.
Monday, April 11th, 2005
After our son was born 20 months ago, I took a total of 8 weeks off. One of those weeks were my own vacation time, 5 weeks of maternity pay at 60% of my usual pay, and 2 unpaid weeks. I was breastfeeding and going back to work meant pumping every few hours during work hours. I was not looking forward to that, but knew that I had to go back to work. My job was one where I could take it or leave it - I didn’t love it and I didn’t hate it, although I really disliked a few people who I had to talk to occasionally. I have an engineering degree that I worked quite hard for and it was difficult to just “let it go to waste” by staying at home. There were other reasons too, all financially related. We still barely have enough furniture in the house, not enough savings to let us live on one income alone, baby stuff costs a lot of money and we didn’t get many gifts. My baby shower had a pathetic turnout of 5-women. Yes. Five. I don’t think people dislike/hate me, it’s just, everyone I knew lived far away and a lot of my friends are male. So yea, I needed to go back to work.
As our son grew older and more fun to spend time with, I agonized constantly about quitting and staying home. After all, he’s young only once and I will miss all the milestones if I’m not with him. But, for the aforementioned reasons, I stayed working, outside the home. Our daycare was costing a lot of money. So much so that I looked for an in-home daycare and it worked out quite well for both parties.
However, we decided that I would stop working and stay home after we have our second child. It would only make sense, as daycare for 2 children will cost almost as much as I would be making.
But there were some difficulties at getting pregnant and staying pregnant. We’re finally on our way now, and if all goes well, we might get another baby.
At 2 months pregnant, layoffs came around and I was one of the unfortunate employees who were cut. Immediately after that we went on a pre-planned trip for 10 days (which was all free, thank goodness). And by the time we came back, I was starting to swell and needed maternity pants, real bad. I pondered about looking for another job. Things are very slow in this industry at the moment, and I wondered how long it will be before I’d get a call to be interviewed. What if by then, I’d be so big that they will reject me after taking one look? (I know that’s illegal, but how would you prove something like that?) Even if I was able to start working right away at 3-months along, there will be training time, and then I’d work a couple of months before I leave on maternity. Plus, it was not likely that I’d get a lot more pay than I was at the old job. So the money / childcare factor still exists and I’d probably end up quitting right after I finish the maternity leave. Is it all worth it? Do I need the few-months pay to go through all that?
So, here I am today. Almost halfway through the pregnancy, and a staying-at-home-mom.
I’ve always been the frugal type. But now we really have to watch where we spend our money.
Here are some of the things that we’re doing to save a buck or two. We don’t follow all the rules, all the time. But you gotta start somewhere. This leaves our lifestyle less desirable by some standards, but it works for us and most important of all, we’re happy.
* Cut down on eating out as much as possible.
* Don’t order drinks while eating out. Water is good for you.
* Tip less - after all, you aren’t made of gold.
* Make home cooked meals and have the working person bring lunch to work - avoid T.V. dinners as they’re more expensive and less healthy in general.
* Make batches of food and freeze them to save time.
* Recycle grocery bags to be used as garbage bags - they’re free.
* Clip coupons (only for things that you will use for sure).
* Turn off lights when no one’s in the room.
* Wait for a full load of dishes before turning the washer on.
* No cable television.
* Use cell phones that have included minutes to call long distance instead of the home phone.
* Use phone cards or internet phone to call internationally.
* Weigh ‘want’ vs. ‘need’ carefully in all purchasing situations.
* If a generic brand will do, buy it instead of the name brands.
* Shovel your own snow, mow your own lawn, DIY more around the house if you had paid people to do it before.
If you have other money-saving tips that you use, please do share.
Saturday, April 9th, 2005
Finished with tax returns for us (and the parents - yes got it all figured out - what a mental workout). And it’s the first year that we don’t have to make a payment. Yah!
Now I just have another 497 tasks to finish.
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Remember that RSS post I wrote? I’ve changed my mind. I’m a woman and I’m allowed to change my mind at any given time, for any given situation, alright?! OK. So I will RSS partial posts only.
This is subject to change at any time without further notice.
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We’ve finally moved the little guy to his own room to sleep. The room that was painted so nicely with yellow and blue, with dolphins and fish and seaweed, oh my. He’s 20 months old now. He has slept in that room less than 7 nights prior to the move. It’s actually going better than I thought. Although he still wakes up once in the middle of the night, it’s relatively easy to get him back to sleep. However, Thursday night was miserable!
The night before he actually slept 9 hours straight. The first time in… forever. It was very good sleep, but not for me. I’ve gotten so used to waking up every 3-5 hours that I still woke up at the usual times. Then the next afternoon he decided that he didn’t want to nap anymore after 45-55 minutes (typical nap is 2-3 hours). I didn’t let him go to bed early - as he’s never slept more than 9 hours straight before. How do people get their kid(s) to sleep 10-12 hours??? I did not want to be awake for the day at 4 a.m. So I put him to bed at the usual bedtime. 3 hours later, he woke up. And he was up for TWO hours!!! He hasn’t done that for a few months now and I was running low on patience at 1a.m. in the morning. I’m surprised I still have any hair left.
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Spring / summer is finally here to stay. I hope so. I’m so done with winter.
Winter here is dreary. It makes a lot of people weary. And grumpy. Of course it does, because the sun goes down around 4 p.m. and does not come back up until at least 7 or 8 a.m. the next day. It’s usually dark and cold, and I don’t just mean cold. I mean really cold, reaching temperatures of -20F is not unusual. And for weeks on end. And you must wear all that gear just to go outside, even just to get the blippin’ mail.
But, spring. Spring symbolizes new beginnings, fresh starts, and hope. It’s the time to get ready for a great year. To declutter your closet / house / life. To dream. And to make those dreams become realities.
The best part - the mosquitoes hasn’t arrived yet.
Sunday, April 3rd, 2005
Hiya Californians, I have a couple of questions regarding tax return in CA. Trying to help out the parents here.
* Does everyone fill out the “schedule CA” thingy? Why/what is that all about.. Why can’t it be just the 540 alone?
* Do I have to make a photocopy of their 1040 forms and send that along with the state tax return forms? (Some states require that)
Thanks so much!!!
Saturday, April 2nd, 2005
This SBA is by far one of the least malicious trolls I’ve read on any blog. BUT, this is the very first troll to leave a mark on my blog!
As typical as trolls come, this one is not so different. First, you suspect whether there are any grey matter within that space called a skull at all. Second, you wonder what causes them to spew the nonsense that comes out of their mouths (well, fingertips). Third, their classic act / ability of making a complete different subject/topic from the actual content of your post is amazing.
Ah. I should not spend the time to dignify any troll comments.
Friday, April 1st, 2005
I’m probably one of the last people to discover RSS. It is very cool, in that you don’t have to reload a page to see new posts. I don’t quite understand how this technology works, but it synchs up to whatever website of interest and informs you when there is anything new! It’s awesome. And it’s very helpful when reading blogs, for new posts.
I don’t know if viewing/reading the post in RSS will register as a new visit to the site counter (I would not think so), so in a way, it’s good for both the reader and the blogger. The reader can choose to go to the actual blog and make a comment if s/he wishes, but when there isn’t anything clever to say, then s/he doesn’t. And since this does not register as a new visit - if the reader does not leave a comment, the blogger wouldn’t even know anyone was reading and would not feel neglected when it’s showing 200 visits but only 1 comment was left behind… because it would not show 200 visits…
Is that how it works?
However, not all of you have your RSS turned on. I was wondering if it’s too much to ask that you have it turned on? To full page/post view, instead of the first paragraph or the first 250 words?
This will not only have the aforementioned advantage on both sides, it will also save readers a lot of time. Which we all know is valuable, regardless of what’s going on in your life.
So, what do you say friends?
*** updated ***
Seems like it’s a good idea. But, does it prevent some from making the extra effort to put a comment or two in those near and dear to their hearts?
This remains to be determined.
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To turn RSS on blogger, go to “change setting”, click on “settings” tab, and then click on “site feed”. Select “yes” for publish site feed, and “full” for descriptions. Hit “save settings” and then republish the indexes, or the entire blog if you wish.
I don’t have typepad, and probably never will, so I don’t know how it is done on typepad. Or any other blogging sites.
