Merry Christmas!

Tonight I post from the hospital. Being the newbie on my unit, I was lovingly assigned to work overnight Christmas Eve, Christmas, Dec. 26, and Dec. 28. And as I was dragging my feet through the front door throwing myself a pity party in my head, I entered to see the hospital bustling with visitors, their arms filled with gifts and food with smiles on their faces. My heart warmed, and I thought if these kids and their families have to spend their Christmas here, why shouldn't I?

My mom spent last Christmas in the hospital, and there were people who cared for her with love and compassion despite the fact that I'm sure they would have rather been home with their families. We had a scare the other day that I was sure would land her another Christmas in-patient. She was experiencing nausea, diarrhea, abdominal pain, and all the other symptoms of a bowel obstruction. A bowel obstruction is a highly common complication of any abdominal surgery. It tends to present itself weeks after surgery when things in the gut have shifted back in to place, and for one reason or another, a part of the intestine gets blocked, twisted, occluded. Sometimes it is resolved with a less invasive intervention, but often times it requires surgical repair. Fortunately, my mother had a CAT scan that was negative for a bowel obstruction, and she also squeezed in her 5 week follow up with Dr. Nelson, and things look good. She is healing well, and probably just had a little stomach upset. Phew!

So tonight when the rest of my family is together and enjoying the holiday, I am here taking care of the kids, and I take care of them with an extra dose of tenderness and love to honor all the kindness that's been showered on us over the past year.

Merry Christmas, Happy Holidays, and here's to taking time to show those around us how much we love and appreciate them.

And while I'm feeling like a TOTAL sap, I'll share this with you too: "Transcending."

Advice from Baby Brother

For those of you who are unaware, Mom is one of many. She's the first girl, and third born of the crazy eights. Her brother Peter sent her this today in reference to her beginning radiation:

Save some money:  Just take the door off the microwave, lay it on your belly, and fire away!

Interesting strategy, eh?

Speaking of radiation, Mom had her appointment today with Dr. van Rooy and she's to begin on Tuesday Jan. 6. On Christmas Eve, she'll have another CT scan to get an accurate baseline picture of how things are doing this far out of surgery and before radiation is underway. In the meantime, she continues to be showered with the most sincere and surprising acts of kindness. Example: the woman she works through at the bank sent her chocolate covered fruit! And it's not just the food (which is delicious), it's the prayers, the thoughts, the hugs, and the laughs. We can't say thank you enough for these gestures of kindness, especially knowing that people have busy lives of their own.

Sloan-Kettering Memorial Cancer Institute

Mom trekked to the Big Apple last Thursday for her final consult with Dr. Bajorin before commencing radiation. Marilyn R. was at her side writing like crazy, Mom was asking questions, and I was desperately trying to follow while being on speaker phone from Boston. He clearly knows every bit of evidence out there on cancers such as Mom's, but did not have anything new to offer in terms of knowledge or treatment options.

She'll have her first appointment with Dr. van Rooy this Thursday to discuss her treatment plan in detail. In the meantime, she's been beefing up her brain with all sorts of research on integrative health maintenance options. Hopefully she's beefing up her bod too, because if there is one thing every doctor and nurse has recommended, it's put on some fat reserves before starting treatment. There's a good chance radiation could cause diarrhea, and weight loss always makes battling cancer more complicated.

One interesting little tid-bit shared with us in NYC was a concept I don't think we ever considered. When Mom asked about anything she can do in terms of taking vitamins or making foods high in anti-oxidants more of a staple in her diet, one doctor made a great point- radiation works by killing cells, so take it easy on the cell-strengthening foods.

Isn't that crazy? I had NEVER even considered that! And frankly, there is very little evidence to support that taking antioxidants could ever counteract deliberate toxin exposure, but it sure is food for thought. So before and after radiation she plans to fuel her body with lots of whole grains, fruits, and vegetables, but maybe during radiation she won't feel guilty if she indulges in the occasional chocolate milkshake.

After Christmas, she'll return to Sloan-Kettering for an appointment with someone in their integrative therapy department to discuss health promotion strategies. And appropriately enough, I completed my Reiki certification today, so I'll be sure to use Mom for practice. But I'm not the only one learning new ways to give back- Mom was making and delivering baskets to hospice patients with Marilyn D. this weekend. AMAZING!

Dr. van Rooy, Radiation MD

There's been nothing to report until today, hence the absence of posts. Mom met with Dr. von Rooy this morning, who was part of the panel of physicians and pathologists that reviewed Mom's case shortly after her surgery. He reinforced a few key points, none of which are new, but really sunk in with Mom today:

1. Everything about her cancer has been unusual and unpredictable.

2. Although there is no measurable disease, it is highly likely that some cancer still exists somewhere in her pelvis.

3. Radiation is the next best option at curing her of cancer.

He had done a very thorough review of not only Mom's cancer history, but also her complete past medical history pre-cancer. He was very encouraged that Mom is headed to Sloane-Kettering Cancer Institute in NYC on Thursday, and impressed that he'd received Dr. Choueri's notes from Dana Farber within days of our seeing him.

To undergo radiation is completely Mom's choice. It would involve her having 20 minute treatments Monday through Friday for 5 weeks, 25 treatments total. Her entire pelvis will be radiated, which means any side effects will be related to that area, specifically burning skin, urinary frequency, diarrhea, pelvic pain, and her blood counts may decrease from radiating bone where blood cells are produced. It's important for her to prevent infection, stay well hydrated, nourished, and rested. If her blood counts decrease, she could experience some fatigue, but no nausea or vomiting is expected. Aside from some of the potential adverse reactions, if Mom chooses to do radiation now, she can never receive it again.

Seems like a strange question to have to ask yourself: "Should I use up my radiation quota now or save it for later?"

The answer is simple enough. As Mom put it, "I'm living now!" Well said. Radiation it is.

She can begin as soon as she's ready. Her abdominal scar is healed and it's just a matter of making the first appointment to map in the form of dots where exactly the radiation will hit. Yes- it's not as she may have imagined it, but Mom will actually be getting her first tattoo. I'm a chicken, but she's joining an exclusive club with my husband and sister. Albeit, Mom didn't know about Gwennie joining the tattoo club until an accidental exposure while she was home last week- WHOOPS!

Thank you to Marilyn D. for accompanying Mom this morning, and to Marilyn R. for joining her in New York on Thursday. Will report back after her consult with Dr. Bajorin of Sloan-Kettering.

All that being said, Mom is doing beautifully. There have been no residual side effects from surgery, she is taking one day at a time, processing information, and making changes towards a positive and healthy future. Thanks for the continued support!

Just a Little Clarification

It wasn't until I spoke to my Aunt Coco this morning that I realized how poorly my last post read- sorry! I was so tired!

Mom is going forward with radiation (I think that was the part I really skipped). Technically she is cancer free right now because any measurable disease was removed during her surgery, however we have no way of knowing that some little cancer cells aren't still floating around somewhere. We were in the same boat last year, opted to do chemo just in case, and it still didn't work. So although she is a bit of a pioneer because her case is so unusual, she's been well advised that radiation is a good option at this point.

The hard part about medicine and nursing, is that everything we do is "evidence-based." If there have been reputable studies that prove the treatments we chose are the best therapy, then that's why we do it. In the cancer world, every patient is new territory, and there aren't always studies that exist to back up treatment plans. Recommendations are made with the best of intentions and often based on similar cases, but there are no guarantees.

So who knows! We could be subjecting Mom to radiation unnecessarily because she's cancer free, she could have cancer right now and the radiation won't work, but only time will tell. In the mean time, she is incredibly positive and motivated to live her life as planned.

And you can't do that without a new wardrobe so we spent a few hours at Talbot's yesterday morning soaking up the sales :)

She Did It!

Not sure if it was the turkey, the ativan, or Gwennie and my ratty childhood stuffed animals by her side, but Mom conquered the MRI this morning without difficulty. The technicians were so kind and let her go in feet first which made a world of difference, and I was able to stand right at the entrance of the machine and lay my hand on her head for the entire 40 minute scan. The best part- her liver is cancer free. They noted some nodules and one tiny hemangioma, but none of which is cancerous or at all concerning. In fact, many people have these abnormalities and never even know it.

We also booked it to Boston this afternoon to meet with her consult doctor at Dana Farber Cancer Institute. He's certainly more blunt and direct than the doctor's we're used to dealing with in Hartford, but since we knew what to expect, we had a very productive consult and he put our minds at ease. He reinforced that Mom is clinically cancer free, and so radiation is not absolutely necessary at this time, however if this cancer comes back it will be very challenging to treat. Once again, we left his office sure beyond a doubt that we're making the right decision.

Hoping my spelling and grammar aren't too disastrous, but it's been a long day, long and positive at least!

Tanning Booth Trauma

We already know tanning booths are bad for you, but here's one more reason why: Mom went to have her MRI yesterday and absolutely couldn't go through with it. Severe feelings of claustrophobia set in almost immediately, which to those of us who have never experienced it, may not make sense, but I've seen many patients go through it and it is frightening for them. She said it reminded her of her one and only tanning bed experience, which lasted only seconds as well.

And because nothing can ever be simple, she scored herself a urinary tract infection too. Just a standard day in the life of recovery.

Dr. Nelson removed her staples, and despite the pain that accompanied that pleasant experience, she reported that Mom is recovering beautifully.

MRI re-try on Friday morning. We'll practice some deep breathing, and hopefully still be in a bit of a turkey coma. Otherwise, she's home and comfortable in the splendiferous care of my little sister Gwennie.

Dr. Ramhan Noodles

I couldn't help myself.

I'm sure I've spelt his name several ways up till now, but I've finally got it right. He is covering for Dr. Donadio while she is on maternity leave. Dr. Ramhan (ra-MON) has always had a special place in our hearts because he was the oncologist on-call last Christmas Eve when we ended up in the ER, and he's also married to our dentist!

We met with him yesterday early morning and he explained to us that Mom's case was actually presented at oncology rounds, meaning oncologists from every walk of life, including those who have cared for her, discuss her case, look at her files, and come up with what they think is the best plan. Because Mom has already done chemotherapy, and this transitional cell carcinoma wasn't knocked out the first time, it's less likely that chemotherapy would be effective a second time. The plan has taken on a new life, and this time we're trying radiation. Unlike chemo which is systemic, radiation is very focal. It only impacts where it hits. Which brings me to some very good news- once the tumor was removed, a thorough wash was done of Mom's entire pelvic cavity, and that fluid was collected and sent to pathology for testing. The pelvic cavity wash came back negative for evidence of cancer cells, so for all intensive purposes, Mom is cancer free right now. 

I know what you're thinking, "you said that last year before chemo too!" Well, when there's no physiologic (tumor) evidence or scientific (microscopic cancer cells) floating around, that's how they explain it to you. If there are any little cells hanging out, they're in her pelvic cavity, which is why radiation right to that area has the most potential to kill the little buggers.

Emotionally, this was very hard for both Mom and I to latch on to. It seems every day there is a new twist. You have ovarian cancer. Just kidding, it's a recurrence. You need chemo. Just kidding, you need radiation. As Mom put it, she has a certain comfort level with chemo; she knows her nurse, she knows where the bathrooms are,  and she knows she knocked the symptoms out of the park. Radiation is new territory, with new symptoms and side effects. We'll meet with her radiation MD, Dr. von Rooy, the second week of December to talk it all through. The earliest she'll start is in 4 weeks, because her scars need to be more than well healed so as not to put her at risk for infection. More to come on radiation...

Dr. Ramhan was very helpful on many fronts. He also suggested Mom have a baseline MRI on Monday. This is because she has nodules on her liver that were felt and seen during surgery. After looking at the impressive collection of CAT scans she's collected over the years, these nodules has been there all along with very minimal changes, but he just wants to get an MRI now of her pelvic area so they'll always have something to compare it too.

He also gave me some great resources to research and get linked in with clinical trials happening all over the country. I gave a call to the organization and was hooked up with Krista, who will have her pulse on all trials Mom is applicable to participating if she wants to. Any time Mom's situation or treatment changes (ie when she starts radiation), Krista gets a call, she modifies Mom's profile, and sees what else is out there. It's a phenomenal system, and so user friendly. We've gotten a list of 7 that meet her criteria so far, but we'll go through those in a few days.

We've also got an appointment with Dr. Choueri at Dana Farber, who we saw last year as well, and Dr. Bajorin at Sloan-Kettering, who Dr. Ramhan worked with closely for years. So we're covering our bases, consulting with the experts, researching clinical trials, drinking lots of tea, catching up on Mad Men, and rearranging Mom's bedroom today. We're very busy and productive people.

Home, Home on the Range

She's home! We finally got discharged at 7:45pm. Dr. Nelson was so apologetic that she hadn't heard about le gas sooner (and therefor worked on the discharge paperwork sooner), but she was in surgery all day. Seriously? It doesn't get more amazing than her. We had a good consult with her and she gave Mom very explicit instructions about what is safe activity and what is no-no activity. For example, walking is highly encouraged, driving is off limits for three weeks. No push/pull movements (like loading or unloading the dryer), but stairs a few times a day are okay. As she starts feeling better and better, I'm sure we'll have to do a good job of reminding her to take it easy.

First thing she did was take a long shower, and then I made her my grandmother's Dijon chicken with parsley and lemon couscous. She's back to the bland and easy on the belly diet until things are really cruising.

Tomorrow morning at 8:40 we're right back in the cancer center for an appointment with Dr. Rhaman, who will tell us what the plan is for chemo, but that won't start until the week of December 8th.

And then Gwennie gets home around dinner time, which will be Mom's best medicine of all!

Stick a Pin in It

I'm sure that's what Mom would like to do to her belly right now, because although she's had two little tiny teases of toots, her belly is still very distended and uncomfortable. She's up and moving as much as she can tolerate, and otherwise her hematocrit is back up, her blood pressure is back to her norm, and she is ready to go home!

It's been so great to see her so chipper. Amazing it's only been 3 days!

Chicken Soup for the Bowels

No, not the name of my new novel. Mom's friend brought chicken soup from Crown (a major hit last year) and it's really gotten the tummy grumbling! She went for a long walk this evening, climbed a flight of stairs, and is doing everything in her power to get things moving.

She took to the 2 units of blood well, and she's just had labs drawn to check if her hematocrit is on the rise.

I'm hoping she gets a good night of rest, without sheet issues, and hopefully tomorrow will be the day. In the meantime, we're just hanging here sharing a grape soda (totally organic and sugar free) planning the Thanksgiving menu. GRAVY!

Stinkin' Sheets

Sorry for the late post last night- long day and I was pooped. Mom had an okay night. She didn’t wake up feeling terribly well-rested, and believe it or not, it was her sheets' fault! They were all bunched and messy and she just couldn’t seem to get settled, but she doesn’t remember anyone coming in the room, taking vital signs, etc. so we figure she just conked out and slept right through it.

Unfortunately, her hematocrit dropped to 21 this morning down from 24 yesterday, so she’s scored herself 2 units of blood today. Her blood pressure is still low for her, but within stable limits. No gas, but improved bowel sounds. She was able to have some cream of wheat and crackers for breakfast, and I snuck her some fresh watermelon too.

Her spirits are top notch, she’s starting to read some emails and check out the blog. She walked the hallways herself today, and we’re hoping this blood will speed up the process. I’m feeling pretty confident that if this transfusion does its job and she’s able to get her gut moving, maybe tomorrow we can go home.

I know I mention this a lot, but my Mom's health is being directly impacted by the generosity and effort from a complete stranger. Donating blood is one of the easiest ways to help save lives, and it makes you feel so good. You know that feeling you had walking out of the polls on November 4th? Multiply that by 10!

D/C the PCA and Move to PO

What?

Mom's nurse was a new graduate, so I can completely empathize, but she was a little heavy on the acronyms! To translate, Mom's Patient Controlled Analgesia (a pump through which she can self-administer pain medication) was discontinued, and she's now taking pain pills when needed by mouth. This symbolizes a huge step in the right direction, because her pain is well managed, not to mention that she's had not one bit of nausea, has walked the halls twice, and is hoping to try solids tomorrow- providing things move along tonight, if you know what I'm sayin'...

We met with Dr. Nelson bright and early, who was happy with Mom's progress, and graciously and patiently explained and re-explained many details of the surgery since Mom's memory of yesterday is limited. The only main concern throughout the course of the day was her extremely low blood pressure, which was causing waves of intense dizziness. It was explained that this could be due to the combination of extreme blood loss during surgery and the anesthesia. As I mentioned before, her hematocrit (measure of whole blood circulating) was also down to 30 yesterday post-op from a healthier 37 pre-op (42 or greater is ideal in adult women). By this morning it had dropped to 25, then 24 this afternoon, and we were sure a blood transfusion was on the horizon. To combat her low blood pressure, she was being pumped up with tons of IV fluids, but by the afternoon, she started peeing a ton and her blood pressure rose a bit and she really perked up.

Dr. Nelson said her hematocrit and blood pressure certainly warrant close watch, but often times from so much fluid, the hematocrit can get a bit diluted, but as the body regulates by releasing that excess fluid as urine, things can re-regulate themselves. Hopefully, no blood transfusion.

Overall, Mom had such a great day. She had visits from friends, received a ton of emails through St. Frannie's patient care website (Kudos to Tante Charlotte for sending two in one day!), and had one great nurse after another.

This recovery experience has already been drastically different than last year, it's certainly providing me with great hope and relief, and I can only imagine how happy my Mom must be.

Since her pain and nausea are well controlled, she just needs to pass le gas, tolerate a full diet, and have a symphony of bowel sounds. Then- home we go!

Finally Getting Some R&R

Mom was moved from the recovery holding area to her room on the oncology floor at about 4pm and is doing extremely well. Her pain is well controlled thanks to her PCA (patient controlled analgesic), she's had no nausea, and has been able to nap on and off since arriving to the floor.



Since she was so out of it in recovery, Dr. Nelson didn't try to explain anything about the procedure to Mom, so Coco and I were able to introduce the information to her and Dr. Nelson will be by later this evening to fill in the blanks and answer our questions. I can't say Mom was thrilled to learn it was a recurrence or that she will have to undergo chemotherapy, but she's been able to let go a little and just allow herself to rest. We have plenty of time to process and talk things over later.

As for now, Coco and I are just camped out in Mom's room while she naps, hoping Dr. Nelson stops by before my stomach eats itself.

Aha! The resident who assisted in the surgery just popped in, echoing all the wonderful things we've heard repeatedly about Dr. Nelson, and also mentioned that the surgery was certainly not an easy task given all the residual scar tissue. Not surprised. Mom likes to keep people on their toes.

In Recovery, and No Sign of Howard...Phew!

Mom's surgeon, Dr. Nelson, came to speak with us at 1pm immediately after Mom had been rolled into recovery. She did very well during the surgery, however the vast majority of it ended up being done manually rather than with da Vinci due to the amount of scar tissue. The biopsy on the ovary showed that this cancer is not a primary ovarian or gynecological cancer, but rather a recurrence of the ureter cancer she had last December. It is a positive thing that she does not have a new type of cancer, but a negative finding that her previous cancer has come back.

The best explanation is that some microscopic cells remained in her body and latched themselves on to her ovary and grew rapidly over the past few months, since there was no detection or evidence of this cancer on her previous CAT scan.

Out came the two ovaries, two fallopian tubes, and uterus. The cervix stayed since it was well adhered to the bladder, and to take it out might have caused more damage than it was worth. Everything will be sent off to pathology, but Dr. Nelson felt fairly positive that the tumor was contained in the ovary. Based on our knowledge that this cancer cell (transitional cell cancer) clearly wasn't eradicated by Mom's last chemo, she's definitely going to have to undergo another round of chemotherapy starting in 3 weeks. What chemotherapeutic drugs they decide to use will depend on what further pathology results show, and what Dr. Rhaman decides would be the best choice. He will replace Mom's primary oncologist (Dr. Donadio) while she's on maternity leave through February.

A bit of an unexpected twist in the adventure, but bottom line is Mom is safe and stable. It will just have to be one step at a time, one day at a time, but we feel more than confident in her team and now it's just a matter of getting her good and strong to kick the ass out of chemo again!

Over and Out. I mean Ovary Out.

We'd just gotten back to St. Frannie's and barely turned on our computers when Jeff called me in the waiting room. They were able to use the da Vinci robot for part of the surgery, but because of the impressive amount of scar tissue and the sheer size of her ovary, it's going to go forward as open abdominal surgery as opposed to primarily laproscopic.

Now that the ovary is out, there's a 15 minute break during which the pathology tests are run, which will indicate the type of cancer present in her ovary, then dictate how much they need to do. At this point, we already know she's having a hysterectomy (uterus, ovaries, tubes, cervix), but they may also biopsy some surrounding areas and/or remove lymph nodes.

Stacy, the family liaison, just sat down with us in the waiting room and assured us that she keeps her eyes and ears out to make sure we get information as soon as possible, and further reassured me that I'll be at my mom's side as soon as possible!

Large And In Charge

That's what I called mom this morning in pre-op holding- her belly is quite sizable these days, no wonder since she's carrying around an ovary the size of a cantaloupe! Yes, that's right- eat your heart out grapefruits, she's moving up in the world.

Coco and I drove her in the early morning darkness. It's almost comical how opposite she is going in to this surgery based on her last experience. This time- NOTHING goes to the hospital that will have to come back home for fear of carrying home any delicious buggies. We've even been instructed to bring tilex spray (apparently the most potent and only bleach-containing spray), gloves, dry wipes, and disposable toiletries. That's it. And we're too wipe down the things in her hospital room whenever possible. Do you think her last experience with c.diff has put her a bit over the edge? Sometimes knowing "too much" can have it's benefits though- she used Nair hair-removal lotion on both of her arms yesterday because nothing was more painful, then having tape ripped off her arm hair. Genius!

And I have a Howard development! Remember the miserable post-op nurse Mom had who made her cry??? He still works there! To every person we encountered, Mom plead her case: "I had such a bad experience last time, can I please please please have my daughter with me in post-op?" It's usually a very big no-no because it's a busy place with lots going on, but after hearing it enough, they relented. After she had her IV's placed (yes- two- ouch), we met her OR nurse, Jeff, who has been the nurse working the da Vinci robot since it's arrival to St. Frannie's a year and a half ago. He snuck me in to the pre-op holding area (also a no-no) so I could meet all the other bodies who would be in the OR with Mom. He gave me all the answers to my "what-ifs" and spoke to the nurse manager about making sure I can be right there when Mom is rolled out.

The all-star line up includes Jeff, her fantastic da Vinci OR nurse who's also proved to be Mom's best advocate right off the bat. Dr. Spark, the anesthesiologist who's ID was so worn thin I had to believe there's no one more experienced to be at her bedside. Jim, the nurse anesthetist (hooray, another NURSE) who will be at her head managing airway, vital signs, medications, fluids, etc. with the help of Dr. Spark. Dr. Boyle is Dr. Kennedy's partner who will place the stents in her two ureters from Lil' Lefty so everyone can visualize and protect the little buggers during surgery. Last but not least- Dr. Nelson. I have to admit my eyes welled up the second I saw her! She immediately puts those around her at ease, and I can see why Mom loved her so much when they met two weeks ago. She just listened to everything Mom had to say with a hand on her arm, completely zoned in despite the group of doctors standing at the bedside talking to one another.

This is a really perfect example of many different disciplines in medicine and nursing coming together to help one person. They're communication with one another, and each person's ability to fill in the blanks based on their experience caring for Mom will play a huge part in the outcome of this surgery. What do I mean you might ask? Well, you can imagine our surprise when her anesthesiologist didn't seem to know she'd already had a kidney and ureter out less than a year ago! Enter Dr. Boyle who filled him in and then they were all on the same page again.

The surgery will be anywhere between 3-6 hours depending on what the ovarian biopsy indicates. I'll be hanging waiting-room style by 10am since that's the earliest possible time she will be out.

Best be getting back to St. Frannie's now! Will post as soon as I'm able this afternoon.

Final Countdown

As of tonight, Mom can't enjoy anything but her bowel clean-out fluid, which for those of you who have had a colonoscopy, know isn't the tastiest beverage this world has to offer. The past week has gotten progressively more challenging secondary to what we're assuming is the continuing growth of her ovary. Mom says the only thing she can really compare it to is being pregnant! She can't button her pants, she has to eat very small frequent meals if she can tolerate even that, and is feeling very ready to get this ovary and co. out! Despite the discomfort, her spirits are in excellent shape. Mom's arrived at a place of understanding and is at peace with the plan.

I blog tonight from work- my last shift for the next two weeks! And Gwennie arrives home for 3 weeks in just a few days. Amazing how this has turned in to a positive opportunity for us all to be home together.

I'll make sure to update the blog as soon as possible on Monday. We report at 5:30am, so I am hoping to have something good to post by mid-afternoon.

As soon as we're needing resources, we'll reach out to Susan Eastman to coordinate, our Helping Hands superstar! Thanks to all of you who've reached out with endless love and support.

FYI: Blog Post Alerts

Coco made a good point in a comment- there is a way for readers to get email notifications of when I post on this blog if you're interested. Here is what I found under frequently asked questions:

How do I notify people of updates to my blog?
We’ve got a few suggestions:
Use the BlogSend feature to email folks when you update your blog.
Get your friends hooked on feeds and give them the feed of your blog.
Feedburner also has a Subscribe via Email widget you can add to your blog after burning your feed.
Blogarithm is a service that will let your friends and family subscribe to your blog and be notified by email when you have new content.
Blog Alert will send your family and friends daily email notifications when there are new posts to your blog. They don't need an account. They just need to enter your feed URL and their email address.

Hope this is helpful!

Endometrial Polyp = Clean

I received the following in an email from Mom this morning:

Good news so far. The endometrial biopsy showed no signs of cancer. Also no signs of hyperdysplasia (abnormal cells). So that’s a good start. They will biopsy the entire kit’n’kaboodle during surgery for further, more comprehensive results. Meanwhile, my belly is round and hard. I look like Alfred Hitchcock.

As we say in our house, we're preparing for the worst and hoping for the best- but this is very promising. Even if the ovary is cancerous, it doesn't necessarily mean it has spread. Frankly, I was more worried about this polyp than the ovary in some ways, so hooray!

Filling in the Blanks

It is so wonderful to hear from everyone again! I've gotten so many thoughtful emails, and tons of questions that I hope I've been able to address adequately. One many of you have in common is, "how is her new house?" A few entries back in early spring, Mom had bought a lovely little farm house and was ready to start her life happier and healthier than ever, but alas, she had to sell the house just as quickly as she bought it. Many factors came in to play, but primarily the sale on the larger house fell through and shortly after the market got nasty. It seemed a smarter decision to sell the new house to the family she out-bid before her savings got nasty! It broke all our hearts to think we wouldn't spend this Thanksgiving in that fantastic barn, but it's now occupied by a sweet family, and Mom isn't faced with keeping up a barn home right now. In a way, it all worked out for the best.

As I understand it, Mom will revisit down-sizing from her current home once she's on stronger and healthier ground. If anyone knows a family looking for a great house in Avon, send them our way!

Good news that is sure to make Mom's recovery swift! Gwennie has arranged to complete the next few weeks of her semester in Montreal on-line so she can spend some time at home. Poor thing was only home for a week last winter, and her cheeks were double in size thanks to her wisdom teeth extraction. We're looking so forward to teaming up on the nursing responsibilities, and the best part is- she can FINALLY drive!!!

November 17, Here We Come!

Mom's scheduled for first thing, Monday Nov. 17. To use her words, she's not entirely thrilled about the whole thing, but happy they're doing it on the earlier side. In true form, Coco and I will make the early morning trek with Mom to the hospital, and then spend all day Christmas shopping at Crate & Barrel.

We have to do something to keep our minds sane.

Once we have a better sense of what resources we need to recruit, we'll let everyone know!

Mom's a Fruit

The title of my entry popped out during my conversation with Coco this afternoon when I desperately needed a laugh.

Mom went in for her 6 month post chemo CAT scan this morning, with an inkling that something might by array. Less than a week ago she paid a visit to her GYN because of some unusual post-menopausal symptoms (but I swear, she's only 47). She experienced excruciating pain and undesirable bleeding during her exam, and an ultrasound showed one ovary was double the size it should be (healthy ovaries are the size of a walnut). The day after her appointment, while I was on the phone with her, Susan Eastman showed up at her door, coffee in hand, and said, "What do we need to do!" Angel! They called St. Frannie's cancer center and made sure that they could see a gyneoncologist after seeing her kidney oncologist today.

Her oncologist who treated her after the ureter cancer, Dr. Donadio, is out on maternity leave, so she was met by a nurse practitioner and another oncologist in the practice. Turns out that the cyst is the size of a GRAPEFRUIT!

The next appointment was with Dr. Beth Nelson (who she loved immediately). She specializes in gynecological cancer, and she also reviewed the CAT scan. The ovary is enormous, there's no denying that, but she seemed positive about several things: it's very smooth and normal in shape, and it's easy to move and manipulate. The shape indicates that it could be just a fluid-filled benign cyst, and the mobility means it hasn't latched itself to anything. Additionally, the rate at which it's growing does not indicate cancer activity, more cyst-like behaviors. The CAT scan also indicated Mom has a tiny polyp on the wall of her uterus, so that was biopsied today, but cyst was left alone. Don't want to burst that bubble!

On to the plan: Dr. Nelson is going to communicate with Dr. Kennedy (Mom's tried and true kidney specialist) to coordinate a day where they can tag-team mom's belly! Because of the vast amount of scar tissue, Mom's history, and the fragile nature with which they'll have to remove the cyst, she wants to perform the surgery using da Vinci- a robot. She'd like Dr. Kennedy to place a stent in Lil' Lefty's ureter just to make sure that kidney has zero complications during surgery. Then, she'll try to remove the cyst via laprascope (less invasive) and biopsy it on the spot. Her next step will be directly based on what those instantaneous biopsy results read. Cancer? Well, the whole kit-and-caboodle might have to come out. Not cancer? She might be more conservative.

Nothing will be happening for about two weeks, given this cyst doesn't decide to burst itself. Mom needs to be off her medications and supplements for a minimum of 10 days, and then there's a matter of coordinating Dr. Kennedy and Dr. Nelson's schedule with Dr. da Vinci. They felt strongly that waiting a few weeks in order to use the very popular (very hard to book) robot would be the safest and most thorough option.

Mom's understandably overwhelmed right now, but is thankful to have some time to tie up loose ends before surgery. She and Coco are decompressing over a pot of tea right now in West Hartford.

I'll post when we have the date! In the meantime, send your good vibes and prayers Mom's way.

And if you haven't already today- VOTE!

12 Weeks Out...

And still no sign of cancer growth since mom's last CT scan!

Take That Cancer!

Mom completed her last chemo treatment exactly 6 weeks ago, and her cat scan with Dr. D today showed no tumor growth, and Dr. K reported that her bladder, and I quote, is "as clean as a whistle." Especially impressive considering her refered to her bladder not too long ago as a "battle field."

So TAKE THAT!

And she bought her new house. And she has two new kittens, Boo & Scout, and she's going on vacation next week.

Life is good.

Brain Fart

I meant to type that the house was built in 1865, and somehow it came out as the 1980's. I must have gotten distracted, because I was born in 1981, and frankly, that was enough for that decade.

Back from a lovely yoga retreat with Mom and Gwennie. We dove right in to the activity by attending a Friday night "Origami Meditation" session, whatever that is, but about half way through our session realized we were in the wrong place all together, surrounded by people who were there for a meditation retreat. Excellent start. Once we figured out how to get to the right place at the right time, the days were filled with hikes, yoga, music, and tons of delicious and healthy food.

Such a good time- would highly recommend it to anyone!

Mother's Day

Every time I've forgotten or neglected to get my mom a card for this- let's be honest- Hallmark Holiday, my mom says, "don't worry honey, you make every day mother's day."

Guilt.

Regardless of it being a ploy for people to buy sappy cards, Mom, Gwennie, and I are going all out this year at Kripalu this coming weekend. There's so much to celebrate: mom completing chemo like a champ, buying herself a new home (wait for it), and Gwennie completing her first year of college and FINALLY getting her license a month shy of 19 years old.

Looking back to early December I couldn't have ever imagined we'd be where we are. The few weeks after her last treatment, Mom suffered from days of limitless energy followed by extreme fatigue, but it's all seemed to settle out now. She's back full force at work, but trying to balance work, play, and rest at the same time.

And now for the SUPER fun part- she bought the most beautiful little dream home you could ever imagine. She'll be closing before the end of the month! Built in the 1980's, it has all the charm of the infamous "Redding House" she grew up in, with a beautiful office over-looking acres of woods, and isn't more than 3 miles from where she lives now.

Gwennie and a friend will be home living with my mom for the summer, my 10-year high school reunion is in October (during which my mom's house becomes a dormitory), and my husband's band is already planning a weekend-recording session in the barn out back (did I mention there's a fabulous barn out back?).

Already, it's filled with life and positive energy, and she doesn't even live there yet!

Lots of exciting changes to look forward to. I know she wouldn't have been able to rebound so rapidly had it not been for the safety net of support she still has around her.

But really, we knew it was meant to be Casa del Talbot when we saw this...

It's All Good

Mom was seen very promptly in the ER, her labs were fine and chest x-ray clear. The urinalysis showed she has a UTI (urinary tract infection), at which point she said to me, "well I have been peeing a lot more and it is sort of cloudy." AHHH! Textbook symptoms, but somehow they didn't raise a red flag. So she was discharged from the ER at 10pm with a prescription for cipro and that antibiotic should start making her feel better in less than 24 hours.

Teaching Opportunity! But just because her antibiotics might make her feel better before she's taken the full course, does not mean she can stop taking them. Resistance to antibiotics happens for two reasons: the being they're over prescribed to begin with, and the second is because people are non-compliant and don't take the full course of drugs. If you don't dose your body properly the first time, the next time you really need an antibiotic, it might not work because your body learned how to fight it off.

So repeat after me: I ______, swear to always take my full course of antibiotics, even if it's for something little, and to never stop earlier than prescribed because I'm feeling better.

"I Have Cancer & A Fever"

This is what I made my mom practice saying as she drove to the Emergency Department at good 'ole St. Frannie's. She returned home yesterday from 10 lovely days in Florida with her father, looking so forward to a big dinner with all her Helping Hands friends, but surprise! Fever!

She's been feeling really under the weather today, and when she called me at 4pm, she hadn't thought to check her temperature, which she promptly did, and is running a 102 degree fever. One phone call to Judy later, and she's on the way to the hospital.

No reason to get concerned, but they'll definitely draw some blood to check her red and white blood cells, as well as get a chest x-ray. If anything seems suspect, she might have to stay a night or two for some intravenous antibiotics.

Fortunately, I'm not working tomorrow, so if she needs some support, I'm a quick drive away. I'll blog as soon as I have an update!

That's a Wrap

YEE HAW! Mom completed her four cycles, 8 treatments, 12 weeks, today- and with flying colors! She sent me this picture from her phone of her with our beloved Judy, whom we couldn't have done this without. She fielded every question and phone call with respect, empathy, and a prompt response. She did have to giggle a bit when Mom called concerned at how cold her nose was two weeks ago, but we'll call it even for the "Christmas gift" we gave her. If you missed that...you'll just have to back-read for yourself.

Tomorrow Mom flies to Florida for 10 days of relaxation with her father, who spent a month at the house following Mom's surgery. I'm so thrilled for both of them that they'll be able to really spend some quality time together.

In three months she'll have a CAT scan and some blood work to monitor her progress, but as of now, she is free and clear of appointments.

At the risk of sounding like a broken record, I don't know how we'll begin to thank everyone for their support. Mom has talked about volunteering some time for other patients diagnosed with cancer, and maybe that's the only way we'll ever be able to repay the generosity we've received; by paying it forward.

We're not out of the woods yet, but it's hard not to feel positive that we've beat this!

Beginning of the End

And I mean that in the best possible way!

Mom had her 7th treatment, which officially commences her forth and final cycle of chemotherapy. She met with Dr. D before hand, who basically waved her hand at mom and said, "get out of here!" No one can believe how well she's done. She'll have her final treatment next Monday, then Tuesday she is off to Florida for 10 days of well-deserved R&R in lovely Nokomis with her father.

The tricky part is the same day she flies out, she will be due for her final Neulasta injection, which boosts her white blood cell production. Dr. D is just going to send her home with it on Monday in hopes that she can administer it to herself, but as a back up she might have to seek out some retired nurse in my grandfather's community in case she chickens out.

Anyone who's had contact with my mother recently has noticed a change in her- she's like her old self on speed! So much so that I've even gotten an email and phone call here and there from loving friends saying, "Is this okay for her to be so busy?" My answer- yes! She is feeling happier and healthier than ever, and is building in plenty of time for herself as well, so not to worry.

It's amazing to think back to December 3rd when this all began- who would have thunk?

Beantown Beckons

Mom is headed to Boston today for various meetings, and we'll have dinner together tonight, but what she's most excited for is Gwennie's arrival into Logan Airport at 9:15pm. Mom's seen Gwennie once since we dropped her off at school in August, and that was in December when Gwennie had her wisdom teeth pulled and Mom was happily on narcotics. Looking forward to this long weekend together has certainly helped Mom stay focused during this yucky week.

She had treatment #6 on Monday and her neulasta injection on Tuesday. Her lab work shows absolutely nothing alarming, which I believe has to do a lot with how diligent Mom has been about drinking obscene amounts of water daily and washing her hands frequently. Regardless, this week has been filled with the symptoms she'd gotten so used to living without- nausea, upset stomach...I sound like a Pepto commercial. She has been working so hard these last few weeks, and chemo does have a cumulative effects, so none of this is unexpected or worrisome. She's got the tools to combat every symptom under the sun, and is doing so rigorously.

She continues to get delivered the most amazing food from her Helping Hands network, not to mention a shipment of chocolate biscotti and cookies from her friend Beth out west, and more delicious goodies from Lynn G. You ladies are really putting her self control to the test! She has gained back 10 lbs since her surgery, and is determined to stay there.

All in all, she feels great. Next week is her "off week," then the fourth and FINAL cycle begins.

One more little thing- remember waaaaaay back before Mom's surgery when I donated blood and said, "She probably won't need a transfusion, but it's still a good thing to do...blah blah blah." Well I just got a postcard from the Children's donor center saying it's time for me to come back. Since I donate two pints of red blood cells at a time, I can only go ever 16 weeks, but the average donor can go every 8 weeks because they only donate one pint at a time. Which means, if all of you who were able to donate, did so at the beginning, and then did so again 8 weeks later, you'd now be coming around be being able to donate again. That would be 16 lives each one of us could have saved between late November and now. Hop to it!

I Agree, It's Crazy!

Even Mom would agree that moving in the middle of chemo is less than ideal, but the heat is on from Paul's company if they are going to get relocation benefits. Gotta love corporate politics. Now, if his company had been smart enough to hire The Talbot Group to handle all their relocations...

Nonetheless, she is handling it very well. I spent the last two weeks there and left the house Saturday afternoon before two scheduled showings and it looked amazing! The open house was today, and I don't want to risk jinxing anything, but dare I say there has been some very strong interest already?

Her energy has been astounding, and the hair is still there! The quality of food delivered continues to amaze her, and the kindness and generosity of friends hasn't let up a bit. It has been particularly wonderful, because although her energy has been good, the meals and offers to help out here and there allow her to focus her energy where it is needed the most. Not quite sure how we will every pay this all forward!

Tomorrow is treatment six. I'll report in the afternoon to let you all know how it goes.

Life Cleanse

Sorry it's been so long, but I can't even BEGIN to express how busy life has been around here. I begin my new job on Monday, so I devoted these last two weeks to my mother, to use me however she sees fit.

We've completely moved her office back in to the house, while getting rid of a TON of paper and office supplies in her green initiative to go more "paper free," re-organized the home office, turned the old office into Tag Sale Central, and now that the house is going on the market this Friday, we've also cleaned it, staged it, painted the basement and garage floor, and Good-Willed the heck out of every closet. Okay so maybe we've hired a few extra hands to help out with a few things, but it's still been a lot to organize!!!

Marilyn Douglas called up Lisa Skelley and before we knew it, they were here to stage every room in the house! Marilyn had made Mom dinner the night before and heard what we had ahead of ourselves, and got Lisa on board to help, who is a fantastic home designer and stager. The place looks fantastic, and they gave us lots of little hints on how to make the place even better (which then magically appear on my "to do" list).

Tom, our beloved handyman, has been doing tasks all over the house, and even brought his homemade turkey and orzo soup for lunch to share with us today. Above and beyond!

One of Mom's lead organizers, Darlene, is a tag sale guru, and is manning our massive home & office sale this Friday in Mom's old office space. Every inch of space if covered in goodies, and we've been having a ball organizing, pricing, and chucking what I can't believe we saved in our infamous "tag sale pile" to begin with. Feel free to come on by this Friday 9-1, Riverdale Farms, Building 12.

Other than being massively productive on the home and office front, Mom is also doing phenomenally well with her chemo. So well that after her treatment this Monday, she completely forgot to take her medications! Whoops! But she spoke with her nurse today who helped Mom get everything back on track. Her kidney function is excellent, her blood values are where they should be, and her appetite is roaring. She said to me yesterday, and this is a direct quote, "I'm the happiest I've been in a long time." For someone navigating some major hurtles just one of which would completely undo any of us, that's pretty darn tootin' amazing.

"Musings On My Hair"

This comes straight from the boss:

To the surprise and amusement of the 2nd floor oncology staff, I have managed to hold on to my hair. The looks of my white bathroom floor indicate otherwise, but it’s an imperceptible loss so far. I attribute it to my strong constitution and obviously good roots (pun intended!)

Just look at the evidence...

My Guerlain grandfather and grandmother. Note "good hair."

My mother. And amazing hair.

My 7 siblings. Not a balding one.

And finally, my dad. With special hair. Still he's 81!

Try Counting Sheep

Poor Mom can't seem to get herself more than one or two really good nights of quality sleep in a week. This week she's dealing with the symptoms from chemo that are accumulating as time goes on, plus really intense chest pain brought on by the neulasta injection. Because it is stimulating the bone marrow to produce more white blood cells, pain can be severe anywhere there are large bones.

Last night, she left her computer at work, took a bath, meditated, drank some chamomile tea, wrote a list of things she's thankful for, and still couldn't sleep. If you can't cleanse your mental palate after doing all that, I don't know how you can. Not to mention, that she's fatigued all the time. It's just not fair!

Her spirits are excellent though, and she's really beginning to think about her life holistically rather than compartmentally. We talk a lot about cleansing, whether it's in regards to clutter, diet, or stress. It's been remarkable to see her commit to making these positive changes in her life.

The hair is still hanging on for dear life. I'm heading home Saturday or Sunday with scissors and clippers in hand, just in case.

Half Way There

Mom completed week 2 of cycle 2 yesterday, which puts her just about at the half way point of her 4 total cycles. All of her electrolytes (sodium, potassium, etc.) were perfectly on target, and her creatinine was 1.1 which is the lowest it's been since her surgery in December! These are the sorts of things that really get us pumped in this household. She was slightly anemic, so Judy administered an EPO injection. Erythropoietin is a natural hormone secreted by the kidneys that stimulates red blood cell production in the bone marrow. Most people who have little to no kidney function need regular EPO injections, but this was not due to lack of kidney function, but more the common side effect of cellular lysis (or destruction) by our good friend, chemo.

Her white blood cells were within normal limits, but trending downwards, and since her team would prefer to avoid another neutropenic (or neutral penis, depending on how you role) episode, she'll also get another neulasta injection this afternoon at 2pm. Overall she's feeling pretty tired today, but is going to try and get a few hours of work in before her injection, then head home for a siesta.

To every one's surprise, Mom's hair is still hanging in there. We have reason to believe that this might be so because she gets her cisplatin split over the course of two rounds rather than in one shot. In other words, she gets 1/2 week 1 and half week 2 of each cycle, whereas it is typically administered all at once during the first week. It might be taking twice as long to really rampage her hair cells, which I was assured is not any sort of indicator of if the chemo is doing its job or not- some people are just lucky!

Sure enough, today on the commencement of her 55th year, she thinks way more hair bit the dust when she was blow-drying than normal. She's going to ride it out for the day and see what happens, but I have a feeling the ceremonial buzz may be in our near future. I personally think everyone should ring in their mid-50's bald.

Here's to Hoping

You may have picked up on the fact that things have been going along- dare I say- well! So from here on out, I'm going to stick to a bi-weekly posting schedule. I'll always report on chemo day to let you know how things went, and then a few days following, unless any important information needs to be shared with the masses.

Tommy and I arrived back to Boston from a much needed and restful trip to sunny Tejas just as Mom was arriving back from her day trip to NYC. She met with a prospective client, and they signed with her, on the spot. Talk about a kick-ass-chick.

Don't let no cancer stand in yo' way girlfriend, uh hum, that's right. You do yo' thang girl.

Now I Know Where I Get It

Mom called me in Texas this evening, sounding tired but in excellent spirits. She was in and out in 5 hours today, but is feeling the symptoms more than ever. Determined to get a good night's sleep, she was trying to stay up until at least 9pm, plus, she said, she hadn't whiped down the counter since yesterday and it was really bothering her. I've gotten eternally made fun of by friends for my obsession with a tidy countertop, but at least now I know where I get it.

She was delivered an out of this world dinner, that will feed her for at least a week, and fortunately her nausea was at bay enough for her to enjoy it.

She's going to try and head to the office tomorrow, but knows she really shouldn't push it. So a successful start to round to two, and she couldn't be happier.

And Mom, when you get around to reading this, here's some kisses from brown horse :)

Okay and from Callah too...

White horse was too busy rolling in the mud (so she's really black horse till the rainy season is over) and Oklahoma was occupied sleeping in the sun, but you'll get kisses from them tomorrow.

Chemo Day 3: We're a Go

I just spoke to Mom and all her lab values were peachy keen, so all is well in the chemo world. She's beating herself up a bit because Dr. K had given her a homework assignment to be completed during her off week (last week): not one, but two 24 hour urine collections. One to be refrigerated, one non refrigerated and as far from her last treatment as possible. She got the first one done last week, but totally spaced this weekend and forgot to do the second. Blame it on the chemo brain!

She struggles with getting a good night's sleep, which is most likely due to how much she is trying to get accomplished during the day, and she's also complaining about her voracious appetite. She never feels satisfied, but is finally within the healthy limits her cardiologist suggested for her and she doesn't want to undo the one benefit of that miserable December.

It can be such a double-edged sword because on one hand it is amazing that she is finally feeling herself again, but on the other hand, this is the opportunity to make positive lifestyle modifications, and it's so much harder said than done!

She is toying with the idea of meeting with a certified dietician, and looking into the Benson Institute of Mind Body (I'd mentioned it a while back) to learn ways to reduce stress and help institute all those positive changes we all know we could benefit from.

Sometimes I worry that we've created a world in which we need bonified institutes that specialize in stress reduction. What are we doing to ourselves? Stress is actually recognized as a risk factor for cancer, modifiable no less! Moral of the story- take some time for yourself every day. Everything else can wait, but your health can't.

PS- Know what stresses me out? The fact that blogger.com has not had spell check for about a month now. It's a problem they claim to be fixing. It's not the broken spell check that stresses me out, so much as the fact that I can't spell to save my life (a sign of genius, I've been told). My younger sister is kind enough to point out the endless gramatical and spelling errors, but I refuse to not post for fear of being scrutinized for my imperfections. How's that for being zen?

Ommmmmmmm.

TGIF

Sorry I haven't posted more this week, but consider it a good thing because there hasn't been much to tell. Some days have been better than others, some nights more restful than others, but overall Mom is just trying to find the right balance as she gets back in to the swing of work. Even though her team did an exceptional job while she was away, there is still a lot for her to do in order to catch up.

As you may remember, we were supposed to buzz her hair Monday because that's when we were told it would fall out, but it still hasn't, so the ceremonial buzzing has been postponed.

Last night she had over some Helping Hands groupies just to thank them for all their hard work thus far. Shame shame on you no-shows, because apparently there was wine, bubbly, and a comical misunderstanding of the word "neutropenic" for "neutropenis." Mom said it was wonderful to see friends and get to thank everyone in person.

What I am especially thankful for is that at her mention of thinking she might not need the meal deliveries any more, everyone immediately put their foot down! Yes, she is supermamasan, but not super woman, and I think not having to commit energy and thought to creating nourishing and delicious meals continues to be the absolute best gift ever. She keeps telling me, "I don't want them to think I'm taking advantage when I'm perfectly capable of doing things myself," despite my reassurance that she can't do everything, and this is just as much a gift for her friends to be able to contribute as it is a way for her to rest.

This was the first week in a long time I haven't been home, thanks to a lovely head cold I've been nursing, and next week I will be in scenic Tejas visiting my dad with my husband. Looking forward to the break, but a little sad about not seeing my Mom for such a long period of time. I worry she might lose her hair while I'm gone, but things always happen for a reason so I'll just have to let go of what is not in my control.

The apple doesn't fall far from the tree.

Looking Good

Mom's appointment with Dr. D went well. She's being prescribed Ambien CR which is a controlled release sleep aid that will hopefully help her fall and asleep and stay asleep, and the pulsating pain I mentioned before is very common in patients receiving Neulasta. It signifies that the bone marrow is working hard to increase white blood cell production, and that it has because her values were back within normal limits.

Although this means she can have a raw fruit or veggie here and there, she should probably stick mostly to things with peels and not fill the house with flowers just yet. This will probably be something she battles with for the duration.

Overall Mom's not feeling 100% today: upset stomach, aches and pains, but that is to be expected. These are just one of those days she'll have to lay low and take it easy.

Cycle two starts next Monday, providing the two 24 hour urine collections show that her kidney function is still in tip top shape.

Super Slacker

That's me. But trust me- it's for a good reason: there's nothing to tell! Mom is having some difficulty getting a good night's sleep, has a little anxiety she has to work through from time to time, but otherwise is doing well. The only new problem is a recurring pain she gets in her very lower back, which goes away just as quickly as it comes, and pulsates in rhthym with her heart rate. She just takes a few deep breaths and it's gone, but it's happening so frequently that it is keeping her up at night. It's no where near Lil' Lefty though, thank goodness- more in the sacrum.

Today is week 3, and her day off from chemo, which will complete the first of four cycles. She's meeting with Dr. D mid day to discuss her blood lab values, kidney function, symptoms, and the sleep issue. I generally meet my mom at all her appointments, but after I said goodnight to her, I felt the slightest itch in my throat, and today it's a full blown soar throat. Not sure if it is or isn't anything, but I'm going to play it safe and hang back in Boston till I'm sure this is nothing or something.

Thankfully, her hair hasn't started to fall out yet, so if we have to put off the ritual buzzing, it can wait a day.

One little ditty I wanted to share with everyone: I spent the weekend taking a two-day intensive course called "Care for the Caregiver."

HAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHA!

Forgive me, I digress with laughter...

Anyway, it was a brilliant course, led by a man who works at The Benson-Henry Institiute for Mind Body Medicine (say that five times fast). If you're unfamiliar with Benson, he's worth a google! We learned a ton about the stress response, how that manifests physically, our thought process, and how we can turn it around with rational thought and make it a positive experience. Sounds crunchy, I know, but hear me out. The exact opposite of the stress response is the relaxation response, which takes practice and dedication to illicite, but can be done. Do you know the average person has the stress response 50 times a day? That's madness!

So not only did I learn to reflect on what stresses me out and understand my triggers, and therefor how to avoid them or learn from them, but I also learned that drinking in moderation is actually good for you. Since moderation for a woman in the US means 1 drink daily, and in France it means 3 drinks daily, I'm half French so I'll just take the mean, thank you very much.

Being silly (who me?), but I did learn a lot and I hope that anyone who has a few free minutes will check out the institute's link.

Will report back after Mom's appt, whether I am there or not.

Signing off, Monica Talbot McKnight, legit R.N.

PS- That's the other reason I haven't posted in a few days: I took my state board exam on Thursday, had to sweat it out until Saturday, and have been in a state of shock ever since.

So Many Treats, So Little Belly Space

Mom's friend Beth H., who loves to bake, sent a loaf of lemon pound cake, a batch of shortbread cookies, and a batch of ginger cookies with walnuts. Somehow I don't think Mom will have much of an issue increasing her caloric intake for the next few days!

She is eating so well, and very healthy, but let's face it, nothing raises the spirits like a sweet treat.

The only new development as of yesterday is that she is oficially neutropenic, meaning her mature WBC's (aka neutrophils) are below 1,000. The Neulasta injection she was given yesterday will hopefully help, but she needs to combat infection on her own as well. I'm attaching the Fever and Neutropenia Treatment Guidlines for Treating Patients with Cancer in case anyone is interested in learning a bit more about the immune system. If you don't breeze through it, here is what you need to know:

1. No one is to lay a hand on anything in Mom's house without washing their hands.
2. No fresh flowers in the house.
3. No raw ingredients, including fruits and vegtables.
4. Wash your hands.
5. Wash your hands.

I stress hand washing, yet again, because this is numero uno in preventing hand washing. It's something even I need to remind myself of when I am at home, but is crucial in keeping Mom healthy.

Oatmeal Date Chocolate Cookies

Lynn G. made these for Mom last week. You don't feel quite as guilty as when you scarf down her M&M brownies (which I ate no less than a dozen of the morning of my wedding), but they are nonetheless delicious! She even shared the recipe with us from Health magazine.

Makes 32 cookies.

Preaheat oven to 350. Melt 6 tablespoons unsalted butter in a small saucepan over low heat. Remove from heat and add 3/4 cup packed light brown sugar. Stir until smooth. In a medium bowl, combine 1/3 cup all purpose flour, 1/3 cup whole wheat flour, 3/4 teaspoon baking soda, 1.5 cups regular oats, and 1/2 teaspoon salt. Combine the butter mixture with the dry ingredients, and add 1 lightly beaten egg, 1 teaspoon vanilla extract, plus 1 cup chopped pitted dates. Fold in 3 ounces coursely chopped bittersweet chocolate. Mix well and spoon mixture by tablespoon-fulls out onto lightly greased (or silicone baking mat-covered) baking sheets. Bake for 12 minutes, until tops are dry to the touch.

Wig: Check Double Check

Mom had a wonderful experience with Sally at The Hair Stop in Windsor. She owns the shop, and has been heavily involved in The American Cancer Society for about 15 years. She even testified a few years ago for having insurance companies reimburse for wigs, which they now do! Good thing, cause they ain't cheap! She also leads some of those "Look Good...Feel Better" classes like Mom took last week. We didn't ask if she'd been personally effected by cancer, but based on her long standing dedication towards helping women, I would imagine she has been. The best part is, she refers to her cancer clients as "my girls." It doesn't get more endearing than that.

It wasn't something Mom was really looking forward to, seeing as losing her hair still provokes some anxiety. It's not so much a vanity issue as it is a fear that this will stare her in the face every day. You can't escape a bald head. Ask my father.

Sally put Mom at ease, kept it light, listened to her concerns, and took every opportunity to educate us about scalp and wig care. The one Mom got is dead on in terms of color, has a style similar to Mom's in the front, but with a little spunk in the back. It's cute, and I'll be sure to post some before and after pictures next week.

When we got home, we wolfed down the most delicious food and settled in to watch the latest installment of The Complete Jane Austen. This one was by far the best- "Miss Austen Regrets," which we highly recommend.

Otherwise, Mom was up at 6:30am, slept well, and feels great today. She's going to try and put in a few hours at the office after her shot at the cancer center this afternoon, and cross some things off her list this morning. As I type, she is enjoying a super smoothie and shopping for cozy hats.

At Least We Beat the Yankees

And that's just about all I'm going to say about that. I woke up sick with emotional stress and a belly still full of chicken enchiladas and cupcakes, but knew I had to put on my game face and hit the road for chemo day 2.

Mom did great. Her creatinine held steady at 1.2, so she was able to get the cistplatin again, as well as the gemzar. Her white blood cell count (WBC) was borderline low, so tomorrow she will have to go back to the cancer center to get an injection of Neulasta, which will hopefully offset the low WBC count and prevent infection. Otherwise, things looked good.

Her blood pressure is lower than it has ever been (90s/50s) which is low, but not alarmingly so.
She was warned that cistplatin can lower blood pressure, so between that and the three BP meds she is already on, some adjustments may need to be made. As of now, she is showing no signs
or symptoms that cause alarm (lightheadedness, dizziness, nausea, etc).

The other great news is that her fatigue seemed to disappear today. I don't know if it was my stimulating conversation, or just the fact that she bounced back on her own. Either way,
she's been shakin' and movin' since we got home. The nurse taking care of her today said that some people can experience extreme fatigue when weaned off Decadron too quickly. Decadron is a glucocorticosteroid, which can help with nausea, but also has some anti-inflammatory effects as well. Mom had been instructed to take it the three days following treatments to help with discomfort, but this time around she'll wean off it much slower until Saturday to see if the fatigue is more managable. It gave her a bit of a high, basically (cue Jimmy Hendrix guitar solo), and she needs to be eased off of it (cue sappy rehabilitation music, like Kenny G).

She's taking a "20 minuter" (which Gwennie and I both know means "wake me up in two hours") before we head to meet Sally, who will be helping Mom select and purchase a wig.

Susan E. dropped off a delicious dinner, very nausea friendly, just in case. You'll need to post where that bread is from. I don't think there will be any left come dinner! Mom keeps having "just one more tiny slice."

Go Pats

That has nothing to do with Mom, but whatever. Today, I put everything on the back burner and send Tom Brady all the positive energy I can muster up. It's funny to look back and read entries I wrote from the sofa in Avon, when Coco and I were hanging around right after Mom's surgery. "New England Patriots Remain Undefeated, So Does Mom," well let's just keep that theme going then, shall we?

Mom is doing well, but fatigue continues to rule the roost. It will always be a struggle for Madame Productivity to learn to build in periods of rest. To her credit, she is really trying to honor the signals her body is sending her.

I had to share this email from Mom's friend Sally A. in Colorado, which she sent in response to the pictures I posted of Mom last week. She is refering to me in the following...

Isn't she cute....bringing you your very first Helping Hands meal. She looks exactly like you......aren't you both lucky.

We look alike, but not that alike! It must be the enormous toothy smile people keep telling me I have. I don't see it though.

Freebies Rule, Cancer Drools.

Last night Mom & Coco went to the class I'd mentioned earlier. There were only six participants, but almost everyone brought a friend. Mom said she was the only patient who still had hair, so it was both frightening and reassuring to interact with these women.

She decided that she's going to be proactive on the hair front. Hearing other women's stories of how traumatizing it was to get off the sofa, but leave your hair behind, was motivation enough. Typically, hair loss occurs within 14 to 17 days of the first treatent, so around February 11. I offered to bring Tommy's clippers and buzz it all off, to which she said, "wouldn't that be too traumatic for you?" Come on, who here wouldn't love to buzz their mom's head? If Gwennie were in this country, I bet we would have a full on smack down for the honor!

The class went over by an hour, everyone got a free hat or wig, and a colossal bag of very fancy cosmetics that are considered "cancer friendly."

Earlier in the afternoon she had an appointment with Dr. K, who helped address some minor issues Mom has been having. Nothing major, more bothersome than anything. Her bladder is a complete war zone, and sometimes her bladder capacity isn't what she'd like, especially considering she's downing all this water every day. He's added a very low does medication to help, and instructed her to drink two massive glasses of OJ in addition to her water intake. The good thing is that this medication may cause dry mouth, so if anything, it'll help her drink her fluids. Constipation is another side effect, but she's already on a good regime for that because of the anti-nausea meds she takes in the days following chemo.

Who knows if it was the long day, the late night, or some other stressors, but she couldn't sleep a wink last night. She was finishing up her yoga when I called this morning, and she plans to lay low with Coco today. No work, maybe an errand or two, but otherwise getting in a good nap is on the top of her list.

And of course, she got not ONE food delivery last night, but TWO! So the fridge is stuffed with delicious treats to get her through the weekend. Thank you to our cooks!

I'm Just the Messenger

My mom called today. "Not one phone call last night," she said.

"Well, I'm not suprised since I read the riot act to everyone on the blog."

"But I wouldn't have minded a phone call necessarily. I took such a long nap that I couldn't sleep till 11:30pm."

I just can't win. But understandably, she doesn't want me to come accross as the phone police. So maybe the two nights after chemo, we keep it to a min. Otherwise, she'll turn off the ringer if she's napping.

A busy day today. A few hours at the office, a doctor's appointment with her urologist, and a small gathering at the cancer center this evening. They're held by the American Cancer Society monthly, and focus of ways to make patients feel beter inside, by improving the outside. They discuss things like wigs, make-up, skin care (which can be particularly challenging during radiation), and what it means to be a woman living with cancer. Could be totally hokey, who knows, but perhaps it will help Mom to be around others like herself.

If I May Make a Request

Mom is doing well for the most part, but she is beginning to see trends in symptoms, specifically in the evening. She gets tired, has a bit of a stomach ache, which takes away her appetite, and can have a head ache here and there. She's been combating this by getting down all her fluids and eating plenty and well earlier in the day, so if she can only tolerate a small dinner, she doesn't have to worry about not getting enough cancer fighting calories.

Her mornings are a different story all together. She gets up, takes her handful of medications, checks her blood pressure, confirms/makes/cancels appointments, and then spends a few hours in the office.

Which brings me to my point, that although she is overall, feeling well, if loving friends could refrain from calling the house in the late afternoon and evenings, it would be much appreciated. After I woke her up, she received no less than 10 phone calls. Even if she doesn't answer, the ringing could possibly wake her up. Might sound trivial, but a good afternoon rest could be the difference between her being able to enjoy dinner and maybe a few chapters of her book, which is really important.

She's on her email several times a day, so she would prefer to be contacted that way. And if you do call, try to make it in the mornings.

I feel so ridiculous telling people to reign in the good wishes, because I know our intentions are good ones, but I'm sure we can all relate.

In The Flesh

I've been meaning to post some pictures I've taken along the way. Here's Mom receiving her very first Helping Hands meal. It's better than Christmas.

There's something crazy about a nurse having to wear gown and gloves when just holding this bad, but the patient gets it straight up, in the bloodstream.

Nothing to it. Mom's room had a beautiful view of the sunny outdoors, adjacent to the blanket heater, and across from the patient kitchen.

A Few Hours Here, A Few Hours There

Mom ventured in to the office for about four hours today, her first time there conducting official business since the last day in November, if you can believe it! Her team has done a wonderful job working together while protecting Mom from any little snags in the past few months, which allowed her to really rest and relax. She'd been anxious to try a few hours a day, and after Judy (our oncology RN) told us she worked full time as an oncology nurse while undergoing chemo herself, it inspired Mom to give it a shot herself.

But really, can you imagine? Giving chemo all day, then on Friday afternoon, sitting down in that chair yourself, then heading back to work Monday? At least it put my mind at ease a bit, realizing that if Mom can lead as normal a life as possible, it could actually really work in her favor.

Her symptoms were kept well at bay thanks to the proactive approach and bucket of meds she's been instructed to take the days following treatment. She was taking a rest this evening when I so rudely called and woke her up from a nap (AHHHHHHHHH! So angry with myself...), and I felt good knowing that when she's hungry, she can just wander over to the fridge and heat up a delicious dinner prepared by some of you.

Not too shabby for day 2!

Touched to Tears

It's one thing to know that a group of friends has offered to run an errand, or cook a meal here and there, but it is another thing all together, when they get together to pow wow in your best interest.

Our Master of Helping Hands Ceremonies, Susan, just called to check in and make sure we got a meal delivery today, and remind us that if Mom's diet or cravings change, just let her know and she can adjust the menu accordingly. She also mentioned that a few of our super stars got together on a Sunday morning to have coffee and meet face to face! How this warmed my heart is indescribable. To think that a group of women, many of them who have been touched by cancer in their own lives, got together to take on yet another cancer-kicking challenge and have jumped in wholeheartedly, well it just makes me want to sob my eyes out in front of an Anne of Green Gables marathon. Friendship is such a beautiful thing, and through Mom's cancer, her friends are befriending one another, and over venti non fat mochas at Starbucks, no less.

I joke, but I hope you all know how much we love and appreciate everything you do. I'm overwhelmed with how we will ever thank you.

Mom is enjoying a mug of Marilyn D's miracle broth, snuggled under Nan's shawl, reading a book recommended by Jen's mom (Kitchen Table Wisdom, a copy of which was also sent to me by Mokus), and Carol & Jerry K's dinner is warming in the oven. Even now, alone in the living room, she is surrounded by gestures of love.

Ugh, I can be such a sap sometimes. I've got to go smash a beer can on my forehead or something.

Saaaaay Chemo!

Of course, I forgot the proper pieces to upload pictures to the computer, so those will have to wait till I return to Boston tomorrow.

Day 1 came and went, and Mom conquered chemo and a bag of M&M's. This weekend was about rest, finishing some projects, and just wrapping her mind around what was ahead. Fortunately, there was nothing to it. We arrived at the cancer center to learn that her creatinine was 1.2 last Thursday (normal, and the best it's been), and her creatinine clearance was 61, which is pretty darn close to normal. In other words, her kidney function seems to continue to trend in the desired direction.

She was able to receive the cistplatin, but just for safety's sake, she only received half the dose, followed by the gemzar. Next week, she'll receive the other half with gemzar again. Overall, the process took about six hours, during which Mom read, took a snooze, dined on fruit salad, a bagel, and her favorite beef stew. Judy also spent a lot of time talking with Mom about what to expect, the medications she needs to take, how to combat undesirable side effects, and the schedule for the next few weeks. She also shared that 12 years ago, she too went through chemo, and has been well ever since. Mom loves her more with every encounter, and the best part is, her sensitivity to body products has seemed to disappear, allowing us to avoid uncomfortable confrontations :)

She is, as I type, out picking up some prescriptions and then Casey from the office. Her energy is getting back to where it should be. She's been given the green light to return to work for a few hours a day if she'd like, but realizes she absolutely MUST listen to her body's signals and head home when she gets tired.

Waiting for the unknown has been hands down, the hardest part of this entire process. There is certainly some lingering anxiety on every one's part about how her kidney function will look next Monday before the second treatment, but otherwise, we're off to a stellar start.

Thursday Mom will go see her urologist and I'm sure he'll do a thorough assessment of how the kidney is holding up, then after chemo next Monday, she and I have a date to go wig shopping. I'm thinking Sybil Faulty, but it's not up to me.