Staying Strong

New chemo start date: Friday, October 16th

Starting Friday, October 16th, I will go to MGH (Massachusetts General Hospital) for chemo every other week: 8 doses over 16 weeks. I've plugged the dates into the calendar on the LHH web site, although they may change once I'm "officially" scheduled at MGH. (So, I'm not sure if I will really have chemo on Christmas Day...)

I had intended to participate in two trials; however, one has been suspended and I'm not going to wait for it to restart. (In that trial, the first of November would be the earliest I could start chemo as it required a 5-week wait after surgery.)

The trial I will be in focuses on treatment after chemo and radiation. I'll have a 50-50 chance of receiving the standard 5-year medicine or the new drug over the same time frame.

How am I? I feel great. I've recovered well from the surgeries, which is why the oncologist is willing to start chemo earlier than the standard 4 - 6 weeks after surgery. I'm not sick. As I see it, I have a disease (hopefully very few cancer cells at this point!) that I need to control with the help of doctors and medicine.

How do I feel about chemo? I feel like a 777 having flown from Chicago to Hong Kong, now in a crazy holding pattern waiting to land. ...Getting started is the only way to get it done. I have several new friends, strong & formidable women, who have already walked this path. Individually and as a combined force, they have been a true inspiration.

Staying strong, Linda

My Ode to Facebook

Last Thursday, September 24th , after the implantation of a port and news of another surgery, I was moving in a bit of a fog. I came home to hear that my Facebook persona had been robbed at gunpoint in London and was desperately looking for someone to wire money to me… er… her or him. Fortunately Will’s teacher knew that I was actually in Boston that day. (The experience my Facebook persona had in London had some similarities to my personal experience in Boston that day…) And the other friend in London who had chatted with my Facebook persona thought the cuss words were a little out of the ordinary for me. My Facebook account had been hacked. I’m now deactivated… and that’s OK.

Facebook was great to reconnect and get a quick view into people’s lives, but I rarely tried to communicate with others on it. I’m too wordy for Facebook. Too conversational. I do better on the phone or in person: I need more than typed tweets to "chat." I relentlessly try to read or to guess emotions behind the electronic words – and that’s exhausting. With a voice and a live being, there is far less guessing. So Facebook was a short but fascinating blip.

My Ode to Facebook: I’m republishing here "25 Random Thoughts" I wrote for Facebook before I was diagnosed with breast cancer and well before my Facebook persona was mugged in London.

Written in May or June 2009….

1. I function best on eight hours of sleep and last night I got four hours in; this could make for an interesting list of randomness…

2. I have two sons, both adopted from Korea; I have one husband, an immigrant from Britain; I grew up in Iowa.

3. I am a full-time mother. I don’t stay at home very often.

4. I don’t think I’ll ever be a true soccer mom – much to Will’s chagrin: “No one else’s mom forgets the ball!”

5. We fly Korean, British and American flags at our house.

6. Regardless of major life changes, I relish in the fact that wherever I am, for ease of removal, I can always find the two pickles underneath the top all-beef patty in the Big Mac. Some consistency in life is good.

7. The powerhouse moms in my daily life are truly remarkable: you make me laugh and you keep me sane.

8. I like spontaneity but need it balanced by consistency (see #6).

9. I love hearing Will say, “Mom, you are so funny!” I want to reply, “Am I funnier than Daddy?” but don’t, probably because I know the answer!

10. I love being married to a man with a great sense of humor – OK, after 20 years some of the jokes need a little reworking, but I’ll take him just the way he is!

11. Being a mom to two boys is awesome! We’re into the bug, worm & slug phase, with no fear of picking them up.

12. My first job was pulling volunteer corn out of bean fields.

13. I’ve milked cows by hand and my parents live on a gravel road, and yes, they have plumbing.

14. I get a thrill out of writing. I get a pain out of trying to write to perfection.

15. I find the little things in life to be the most joyful, the most humorous, and the most overlooked.

16. I’ve been lucky to travel a lot in my life; I regret no expense paid for what I’ve seen in the world.

17. I really regret buying the three shirts with tags still attached that have been sitting in my closet for over a month.

18. I do not like returning things I’ve bought nor do I like shopping in general. Artisan shops, book stores and kitchen stores are a different story, especially if lunch with a friend is included.

19. I have the local pediatric hospital programmed as a favorite in our GPS. Liam has always been gutsy and Will is learning from his little brother..

20. Fact: Getting hit in the face with a golf club, twice in one day, does not always cause great injury, as proven by Liam (somewhat new to the game) and Will (the casual observer). Lesson learned: People are pretty resilient.

21. I love to cook but I’m not thrilled about making mac’n’cheese 10 times a week.

22. I feel blessed to have a caring family and to have networks of good friends near and far.

23. I feel blessed to have a dishwasher – even though it is relentless and very needy.

24. Will loves me all the way to “God’s house.” And still wants specifics on exactly WHERE that is.

25. My goal: to live confidently in the here and now; to visit the past only very occasionally; to glance forward to the future in quiet anticipation.

(In real time, I'm back on Facebook! Here's the link:  https://www.facebook.com/LindaMalcomWriter/  Click "Like" for current musings!)

Benign Spot

The good thing about MRI's: they pick up everything. The bad thing about MRI's: they pick up everything.

Fortunately, my "new" spot that was picked up on last Wednesday's MRI, that was looked at thoroughly on Thursday's ultrasound, and that was whisked away during Friday's surgery was benign -- no cancer. Probably just post-operative tissue acting out and getting caught on tape.

Now, we're once again entering the on-ramp toward the chemo interstate. Bill and I will meet with my oncologist at MGH Friday for a consult. After that, I assume we'll have a new tentative start date for chemo.

Linda

3rd Surgery

5:30 p.m. and I'm home from the hospital. All went well. I'm a little sorer this time than the previous two. I'll have results next week some time. I had a port implanted yesterday so I look a little like a warrior! ;)

Bill fixed me up with 7Up and Campbell's soup then went to pick up Will & Liam from a friend's house where they had a play date this afternoon after school.

We'll probably be lying low this weekend... Sunday is Liam's "Forever Family Day" -- we brought him home from Korea three years ago!

Linda

Plan: a nice quiet Friday night

...and now: the reality of Friday night:

4:00 p.m. Liam, lying flat on his back in our pebble pit under the swings: "Mom, I'm a seal!" Me: "Oh..."

4:15 p.m. Liam, calling out from under the climbing wall: "Mom, can you get this out?" Me, used to having to remove big boogers: "What is it? Do you need a Kleenex?" Liam: "It's a rock booger." Me: "Really? Liam, with a big grin, nods his head. Me: "Will, need your flashlight!" Me, after confirming rock booger: "Why did you put a rock up your nose?" Liam, with a big grin: "I'm a seal!" Me, confused.

4:25 Me, after being unable to find a small crochet hook: "OK, everyone in the car!" Will: "We're going to Dr. Mueller's for a lollipop!" Me: "No, Dr. Mueller is gone for the day. We're going to the hospital to have the rock removed from Liam's nose." Liam: "I want to go see Dr. Mueller!" Me: "Sorry honey, we're going the emergency room and Dr. Mueller will not be there, neither will her lollipops."

4:30 On the way to the hospital, following the directions on the GPS. I had pre-programmed the hospital as a favorite a few months ago.

A sampling of Will & Liam's chat, while I'm trying to control a big case of giggles in the front seat, listening to this exhange: Will: "So, Liam, why did you put a rock up your nose?" Liam: "I'm a seal." Will: "I put a peanut up my nose one time, but Mom got it out. I didn't have to go to the hospital." Liam: "Do you have a peanut up your nose now, Will?" Will: "No, I never did that again. And you shouldn't put a rock up your nose again, Liam." Liam: "Oh."

4:45 Arrive at ER. On a scale of 1 - 5, 1 being trauma, we are judged as a 4. (Liam was quite normal, breathing just fine.) Watched Nemo 1 1/2 times in the children's waiting area, Purelling like mad.

6:30 p.m. Bill rescues Will from the boredom and takes him home for dinner.

7:20 Nurse,in the exam room: "Liam, why are you here?" Liam, suffering post-traumatic stress from the flu shot earlier in the week: "Don't hurt me! No band-aids!" Nurse exits.

7:25 Me, with a sudden thought: "Liam, there is just one rock in your nose, right?" Liam, looking at me out of the corners of his eyes: "One, two, three, four, five, six, seven, eight, nine, ten, Mom!" Me: "Liam, how many really? Just one?" Liam, with that grin of his: "Two Mom." Me: "REALLY?" Liam, nods and holds two fingers up.

7:30 Liam, finding the call button: "What's this Mom?" Me: "That's how you call the nurse." Liam, talks into the call button: "I need a nurse... I said, I need a nurse!... Did it work Mom?" Me, hardly able to control myself at this point: "I don't know. Maybe you need to call the doctor." Liam, again talking into the call button: "Doctor, I need a nurse!"

7:35 Doctor: "Liam, what happened?" Liam: "I put a rock in my nose." Doctor: "Why did you do that?" Liam: "I'm a seal." Me: "When he was a dog last spring, I did the Heimlich maneuver to get the rocks out of his throat." Doctor: "Ohhhh.... this procedure should be less traumatic. Let's have a look Liam." Liam obediently tipped his head back. Doctor: "Liam, you have a rock in your nose." Liam proudly nodded.

7:40 Liam, with his Superman cape on, (a very clever straight-jacket of sorts: pillowcase behind him with both arms inside so that when he was on the bed he couldn't move his arms) Doctor, starting procedure: "You're doing great Liam. We're going to take that rock out now." After a little work with the big tweezers, and a little yelling from Liam, a rock came out. (I wouldn't have gotten it with my crochet hook.) Doctor, taking his head light off: "It's out Liam." Me: "I think you should take another look, just to make sure there aren't two." Doctor, putting his light back on: "Oh yeah, that's right." Liam, hearing me and seeing the light come back on, "There's only one, Mom! MOM, THERE'S ONLY ONE!" Doctor, taking his head light off: "You're right, Liam. Only one."

8:00 ...back home, finally, the beginning of a nice quiet Friday night

Weather in Iowa and Angels on a Pin Head

This journey is much like the weather in Iowa: wait five minutes and it will change! Consequently, with each decision made, I'm waiting about four days to see if the plan stays in place before I share any "news." (My method reminds me of the delay television stations have in case something needs to be bleeped out.)

For instance, my lymph node (the only one which was cancerous) didn't actually "burst" -- there was a tiny, tiny leak. And yes it took a while to get to this conclusion. Although I won't start radiation until after chemo, I had a consult with my radiation doctor on Friday. He assured me that there would be no direct radiation to that site under my arm, only to the breast itself. Ahhhh....

The radiation doctor also left me with this great visual: I'm pretty much cancer free right now. According to him, to count the cancer cells in my body would be like "counting the angels dancing on a pinhead." And THAT -- regardless of what any other medical professional will say on this journey -- is the vision I'm allowing to dance in my head!

:)

Linda

The Plan as of 9/17/09

I went to Mass. General Hospital (MGH) Monday the 14th, and have decided to have chemo under the oncologist I met there.

As it stands today, I will start chemo Friday, October 2nd. The treatment period will be 20 weeks. The first four treatments will be every other week, and the remainder will be weekly.

I will be participating in one trial, hopefully another if the studies will allow we to do both at the same time.

I have two days planned at MGH next week for tests.

Linda

Pet Scan Normal

This is a big one. When I found out I had cancer, my first thought was ‘is it any where else?’ To that, the chemo doctor said, “I can help you.” Boom. PET scan ordered. Radioactive one day. Results in. Immediate relief.

By the way, the radioactive day kept Bill and me in stitches with radioactive jokes…most related in some strange way to James Bond. Even with the new material, Bill couldn’t resist capping off the night with his standard “what’s the difference between a buffalo and a bison?” :) (For those of you who haven’t known Bill for 20years, the answer is: you can wash your hands in a “basin.”)

The coming week is filled with assorted appointments, including a second opinion at Mass. General in Boston on the chemo/radiation treatment. I feel completely confident in my local medical team but have decided to have a second opinion so as not to second-guess the decision in the future.

We had chemo class last week. The only big surprise was for Bill. Karen, the chemo teacher, has a “bauble” rule. It’s governed by the color of the chemo drugs. Mine will be clear, red, and another clear. According to Karen, that translates to a diamond, a ruby and another diamond. I didn’t have the heart to tell her I’m not into jewels, nor that the one precious piece of jewelry I already own has diamonds and rubies, AND that it was a gift from Bill 17 years ago! (Many of you witnessed that “gift giving” ceremony in Iowa and celebrated with us in Illinois…) Anyway I didn’t say anything because she was really holding Bill’s feet to the fire… she was quick-witted and Bill didn’t go in prepared to match wits with a chemo teacher!

Within the next month or so, you will be getting an email from a website that I’m setting up called “lotsahelpinghands.” I believe the subject line will include “LHH.” It will be a central location for family and friends to access notes from me and will eliminate my management, or lack thereof, of email address lists. Locally, it will also let people know how they can help out in the coming months.

Know that we’re staying strong and staying in the moment. Yesterday’s moment from Liam: “Mom, it’s raining in the bathroom!” And it was, a stream from the ceiling, but that’s a whole other story… ;)

Much love,

Linda

Clean Margins!

Ahhhh... those are two wonderful words! I had a "clean-up" surgery on the 25th to remove a few cancer cells that eluded the surgeon during the first surgery on the 11th. I just learned today that the second surgery was a success. :)

After the first surgery, I also learned that only one lymph node was affected -- more good news! Apparently that lymph node had a minor burst; I'm still unsure if that area will require radiation -- opinions vary on that one. I'll find out more in September as the month is dotted with doctor appts of various kinds and sorts. I still anticipate chemo starting in mid-October.

Thank you all for your emails, calls, cards, thoughts and prayers. They occasionally move me to tears. More often they keep me smiling, laughing heartily, and oh so thankful for friends.

The four of us are driving to Montreal Thursday for Labor Day weekend... Safe travels everyone and enjoy the long weekend.

Staying strong...

Much love, Linda

"What lies behind us and what lies before us are tiny matters compared to what lies within us." -- Ralph Waldo Emerson

2nd Surgery

I had a little "clean-up" surgery this morning; hopefully the surgeon got the last of the "dirty margins." (A few little cancer cells that eluded her during the first surgery.)

I was home by about noon, had a cup of coffee some soup, and my wingman is now shooing me up to have a nap before our cherubs our delivered home by our friend Carol.

More later .... should have results from this little job at the end of the week.

By the way, thanks to each of you for the emails, cards, phone calls, offers of help, (and the list goes on...). Also keep the good vibes (I feel all of them!) and prayers coming!

Much love,

Linda

Going Strong

I'm slow at getting information out this week... icing a breast and arm pit and elevating an arm in between runs to and from school and an occasional coffee with a friend... perhaps too much information, but know that I'm going strong!! ;)

The pathological report was good: Only ONE lymph node was affected! Yes, that left me dancing and jumping around in the kitchen. She removed 8 total (and I'm feeling the numbness/achy weird feeling from that part of the surgery.) Unfortunately that one BURST, so I will have to have radiation to that area after chemo. Had it not burst, I would have only had to have radiation to the breast area.

Didn't get clean margins on the tumor excision, so I will go in again for a shorter surgery to finish that little job -- next Tuesday the 25th.

Brain surgeon -- OMG that typo is so funny I have to leave it there... (Obviously, when I get to this part of the day I'm ready for a little rest.) BREAST surgeon & chemo doctor have verified that it is Stage IIa -- that's one level above Stage I, the earliest stage of cancer.

Met with chemo doc yesterday for an overload of information and set up many tests, screenings, etc. for the coming weeks in prep. for chemo in the fall.

:)

Much love, Linda

Quick Update

Just wanted to let you know that it's been a good week! I stopped taking the heavy duty pain meds Wednesday and am doing fine with a little Advil. I was able to take the big bulky bandages off Thursday and am sooooo looking forward to a shower tomorrow!

My friend college friend and her 13-year-old son from Iowa were here all week helping out. The boys had a great time with her son -- it was like a mini-vacation for them with him here. They want to know who's coming next... :)

I'll get results back from the lab next week and that will determine what's next and when.

Have a great weekend... Linda

The News

This is the kind of conversation to be had in person but we are in full swing of summer – playing outside, golfing, biking, going to the beach, and splashing in the rain puddles. My "private phone time" is pretty much limited to 1/2 hour between when the boys go to bed and when I go to bed. So I apologize for emailing this news...

I have been diagnosed with early stage breast cancer. On Tuesday, August 11th, I will have surgery, a lumpectomy, to remove two smallish tumors and 8 – 12 lymph nodes, as it appears to have just gone to a couple lymph nodes.

We are taking this moment by moment and feel blessed with the doctor we've found and with the friends and family we have. My doctor's first words were "it's treatable and it's curable." After pathologic results, we'll make a plan for further treatment for this fall, which will include chemo and radiation.

The boys will be in school full-time and friends have flooded us with offers to help. It feels a lot like what I remember from growing up in Iowa – “neighbors” that come out of the woodwork when you need them most.

We will have our tough moments, but we are strong and we will get through this. We are living in the moment and enjoying every moment. This is a part of our lives now, but it is not ALL of our lives. We haven’t lost our sense of humor – thank God He gave us each a big dose of that! So, I am still Linda, the same ole me, with an added issue. :)

Whether you are a pray-er or a good vibes kind of person, send either or both our way!

Staying strong,

Linda