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!