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The Phone Call

When I was a young kid growing up in Idaho, we seemed to spend a lot more time on the phone (talking) than we do now. These days, phones should really be named whatever Greek words encapsulate texting-with-friends and looking-at-pet-pictures-on-the-internet. We video chat with family to keep in touch, but true honest audio phone calls are kind of rare these days.

There are a few that you will always remember though: “Dad, we’re all OK, but the fireman would like to talk to you” comes to mind. Blame a microwave oven and Orville Redenbacher for that one.

Today, however, I was really looking forward to getting a phone call.

The day started with Carol getting ready for her oophorectomy surgical procedure by showering with Swedish Hospital’s special disinfectant soap (which she also had to do the night before). After waiting the 2-minute minimum time for the disinfectant soap to do it’s thing, she rinsed off, got dressed and we headed down to Swedish First Hill campus.

The covid-19 protocols are a bit more established there right now (they literally changed in the middle of her double mastectomy late last year), so I knew that I was allowed to park the car and walk her up to reception and help check her in. We found a spot on level D (that would be D as in “dog”, not “deer” according to the sign says I) and went through the health screen that you go through at every doctor’s office or hospital these days.

After a quick exchange of health insurance information and me writing all of my contact info on a piece of paper, we sat down to wait. At 8:15AM, the nurse came and took Carol off to her surgery. Patients aren’t allowed to have anything valuable around while under anesthesia, so I am handed over her phone and wallet (we knew this was expected). Caregivers aren’t allowed to stay in the hospital, so I head off home to wait for the phone call.

I did the dishes, but the phone didn’t ring. I started on the laundry eventually at 11:15 I got the Most Important Phone Call from Carol’s surgeon. It only lasted thirty seconds, but it was an extremely gratifying thirty seconds. Everything with her surgery went extremely well. Her surgery was done with a robot (which we knew was the plan) and the robot only needed 3 small 8mm incisions to remove her ovaries, fallopian tubes and uterus. Damn.

Her surgeon said she was waking up and would be heading off to recovery and that I should expect another phone call from the nurses there. Great! Two more loads of laundry later and I got the phone call.

She was out of recovery and heading down to the discharge department. I asked if it was time for me to head down to pick her up. No, she said, “the discharge department is still staffed with more nurses and they’ll tell you when it’s time to come in. It wasn’t all that informative, but I at least gathered that she was out of the immediate surgical recovery area and off to the area where they were waiting for her to demonstrate that she was ready to come home. Time to wait for another phone call.

So I had some lunch, watched some Champions League Soccer in Spanish on TV and folded more laundry while waiting for a phone call. I finally got it at 2:06PM. Carol had successfully met all of the requisite tests and was ready to head home. They knew I lived up in Lynnwood and so it would be at least 30 minutes until I arrived. They told me to call them back when I arrived. I headed down immediately and arrived at the front door and made a phone call.

The aide answered and said she would tell the nurse I was at the front door, awaiting my wife. 5 minutes passed, then ten. Finally at 20 I decided I’d best check again. This time the nurse answered and said that Carol was on her way, but had to stop at the pharmacy to pick up her discharge medications and apparently there was a bit of a line. OK, no worries, as long as things are moving along, I’ll just sit here and wait.

A few minutes later Carol came out and we got into the car to come home. It wasn’t until we left that she told me the story of what was going on in the pharmacy. The pharmacy is operated by Walgreens, not Swedish, so it’s a completely separate business. There were three prescriptions there for her, but, as you may recall, she has no wallet with ID or credit card. Nor does she have a phone to contact me to get information that she could just tell the person what the relevant numbers are verbally. I suspect you see where this is headed. If only she had a phone.

As it turned out, two of the prescriptions were for medicines which we already have and didn’t really need. The other one didn’t actually have any cost associated with it that was to be charged to us and so they were able to actually give her that one. The back and forth exchange of how to make this work (or not) took a good fifteen to twenty minutes in the pharmacy and so now you know why there was a line of people at the pharmacy.

In the end, Carol is now home, consumed some applesauce, fluids and the proper medicines she needed. She’s now resting comfortably and taking a nice siesta in the sun. She’ll be able nap without interruption because I took her phone.

Last Major Surgery, I hope!

Oopherectomy and hysterectomy scheduled for 10am this Tuesday. Prayers and good energy for everything to go well and no hospital stay appreciated. This is the last major leg of my treatment plan — it has been a very long year.

As usual, the last month has been a big mix of high points and low points.

High Points

  • As usual, visits with those grandpuppies!
  • An Easter egg hunt for my grandniece, at which I also got to give my sister a big hug! (she’s now fully vaccinated)
  • Finally qualifying for the vaccine and getting my first shot last Monday
  • A trip to Friday Harbor with my wonderful husband, that included a short adventure cache in Anacortes with an old friend I haven’t seen in several years.

Low Points

  • Declining energy, a concerning cough, higher heart rate, lower oxygen saturation and changes in my lung scans. For cancer patients and survivors, symptoms like this can mean many different things, including a cancer recurrence, infection, and blood clots.
  • None of the options are really “good” but worry about the worst case of more cancer is very stressful. In my case, the cause was determined to be lung inflammation resulting from my radiation treatments. Only treatment is rest and time. Fortunately, this is one of the “best case” options in my case. My cough is nearly gone, and my energy level is picking up.
  • Feeling down about the recovery associated with the surgery. It is supposed to be MUCH better than the old style hysterectomies, but still means less energy, need for many naps, no lifting for 4-6 weeks etc. “I am really sick and tired of being sick and tired” as they say.

I hope you all had a good weekend and a Happy Easter. Much Love,

Carol

Time Flies!

Tomorrow marks our 35th wedding anniversary — can that possibly be true? Our original plan, pre-covid and pre-cancer treatment, was to spend 2-3 weeks touring New Zealand to mark the auspicious event. Our revised plan is to celebrate the day by eating our favorite pizza and watching “National Lampoon’s Vacation”, the movie we went to for our first date. We’re also taking a four day weekend at an AirBnB in Friday Harbor in a few weeks. Not quite New Zealand, but we are looking forward to a!

It appears the last 6 weeks have flown by without an update, so here is what’s happening.

  • My oophorectomy and hysterectomy surgery is scheduled for April 6. Full recovery time is expected to be 4-6 weeks, assuming all goes well. There is currently NO indication that there is cancer in these organs, but since I learned last summer that I carry the BRCA-2 mutation, I now know that I am at much higher risk than most of the population for ovarian cancer, in addition to breast cancer. With my cancer history, and the fact that I’m way beyond having more kids, it’s a very strong recommendation to remove those organs and eliminate the risk of ovarian cancer or uterine cancer developing.
  • I completed 12 of 17 Keytruda treatments this week. They had been causing my liver problems, so I started 100mg Prednisone to stop that effect. I’ve been tapering the prednisone gradually down, currently taking 20mg per day. I am very glad to be on less prednisone, but have definitely noticed a drop in my energy level and increase in sleeping time to go with the lower dose
  • Two weeks ago, I had a surgical procedure – a second attempt at removing the blood clot filter in my vena cava, installed prior to my November double mastectomy. Unfortunately, this attempt was also unsuccessful. Now the plan is to leave it as is until after I’ve recovered from the April surgery, and then consult with some specialists at UW. As long as it’s still installed, I’ll have to be on blood thinners.
  • I had a birthday last weekend – made it to age 56! We had an outdoor picnic with treats from “The Picnic Table”, a restaurant in Woodinville. Thanks so much for the many greetings, good wishes, calls and flowers. Both kids and both grandpuppies were here the previous weekend to celebrate.
  • Yesterday, we met up with Luke and Artemis for some geocaching in Woodinville. We actually sat at a pub (outside) with a food truck nearby. It felt so civilized! Almost like a pre-covid “normal” Saturday afternoon.
  • I continue working at home all week when I’m not at appointments.
  • Many have asked me when I’ll get COVID vaccine appointment, but the answer is I’m not even eligible to try yet, and probably won’t be for awhile. Maybe April.
  • I’ve become a bit obsessed with tracing my family tree on Ancestory.com. Learning about BRCA-2 initially piqued my interest, but following several lines back has led to some interesting non-genetic-mutation discoveries. My ancestor Jan Lucken was one of the original 13 Germans to settle Germantown PA, arriving on the “Concord” in 1683. I now know that one of my best friends is descended from another of those “13 originals” on the same boat. The picture of the original plat of Germantown, below, shows that our ancestors lived four doors down from each other. Small World!

Thanks for your continuing thoughts and prayers, and have a lovely week everyone!

Joy!

Indescribable joy to be done with my 28 daily radiation treatments ! !

Yesterday, I “rang the bell” at the radiation center.

So much gratitude to be alive. I have hair again. We’ve had many beautiful outdoor walks and adventure labs (geocaching). I have a new grandpuppy. My first grandpuppy turned one. Honestly wish I could inject some of the joy I feel in all of you have supported me on this monumental personal journey right in the middle of Covid and mass chaos in our world.

Am I done with treatments? No.

I’m still taking Keytruda and back on prednisone to prevent the Keytruda from attacking my liver.

I have to have a hysterectomy, including ovaries in April-May. Apparently that is now day surgery – not even one night in hospital when done robotically.

I have some lymphedema in both arms and will deal with that long-term.

As all cancer survivors do, I’ll worry sometimes about a reoccurrence. And if it happens I’ll sigh, take a deep breath and pray for more strength for the fight…because it is such a gift to be alive.

Specific prayer request – May you, your family and friends, your state and your world, experience optimism, hope and joy today.

Peace and Love

Carol

I Love Going to the Dentist!

Am I the only one that loves going to the dentist? Yes? Well I got to go today, for the first time in a year, and my teeth feel gloriously smooth and clean. Oncologists advise against going when cancer patients are immuno-suppressed from chemo or other treatments, due to risk of infection. When you aren’t allowed to go, and deal with chemo side-effects of a constant pasty film in your mouth, you really do start looking forward to a teeth cleaning as an exciting event.

The header picture is the view from my new dentist’s window. Peaceful and beautiful view of the northern tip of Lake Washington.

Today also marks another milestone for me – I’ve completed 14 of the 28 daily radiation treatments, so I’m half way done with those. So far, my skin is holding up well so they have not been painful. I am still working on getting a few things scheduled, like the IV filter removal and the oophorectomy.

Prayer and good energy requests:

  • Peace in our country
  • Patience with restrictions as vaccinations roll out
  • Smooth medical procedures for me, and healthy skin despite radiation

Some Good, Some Frustrating

Good

I had a wonderful Christmas with Cliff and the kids. Gifts, movies, a new game, exercising grandpuppy Freddie, a drive-through light show and a radio play rendition of “A Christmas Carol” all filled me with gratitude for my family and support system.

My range of motion in my arms continues to improve as I go to weekly physical therapy.

I have completed 6 of 28 daily radiation treatments to my right lymph nodes; only 22 left to go. Last day is January 27, and I’ll get to ring a bell!

The surgeon says the incisions and my chest are all healing well and “You look great!!”

I can now have a teeth cleaning for the first time in 11 months!

Frustrating

Although I made the half way mark on my Keytruda treatments last week (currently scheduled to end in early June 2021), my liver enzymes are rising a bit. If this trend continues, I’ll likely have to go back on prednisone in order to continue to get Keytruda. I hate being on prednisone!

The filter installed as a safeguard against blood clots for my surgery was scheduled to come out last week. However, after I had 90 minutes under conscious sedation on the operating table, the surgeon had to give up. They couldn’t grab the hook required to pull the filter up and out. Then it was rescheduled for this coming Monday. They had to order some additional supplies to try another “capture” technique. Last Wednesday, I got word that the supplies aren’t there yet, so the procedure can’t happen tomorrow, either.

More appointments must be scheduled. Now that I’m doing well from the last surgery, it’s time to get ready for the next one. I am also at higher than normal risk for ovarian cancer, so I need to have ovaries and tubes removed this spring. Consultations, pre surgery tests and eventually surgery will happen sometime in the next 4-6 months.

Specific Prayer and Positive Energy Requests

Next attempt at filter removal will be soon, and successful

Liver enzymes will stabilize so no prednisone is necessary

Patience (for me and Cliff) to get through many appointments and constant home, medical, work schedule juggling.

Baby Steps

Can’t believe it has already been two weeks since the last update. Recovery from surgery is going fine, it’s just a long road that seems like slow baby steps to my impatient mind most days.

Both drains are out and the incisions are healing well. It is a bit of a shock to look in the mirror after a shower, though, I must admit. This week, I was able to take a shower on my own and get dressed by myself again. My wardrobe is pretty limited, though. I’ve lost enough weight that most of my pants fall off me, and the only shirts I can manage must be button, zip, or snap up the front because my arms don’t have good range of motion yet.

I was also able to work some from home last week, thanks to my sister being here to help with cooking, my transportation to appointments and everything I can’t reach or lift. A number of people have asked “Why on earth are you working?” at various points in my treatment. My answer is that it is actually wonderful to have something to think about that isn’t cancer related. The people at Herrera are so passionate about their work that I’m continually inspired when I get to listen to everyone talking about their projects.

Last week, I had a Keytruda treatment and my first physical therapy appointment. I’ll now go to physical therapy once a week to work on arm recovery and how to avoid future lymphedema. This Monday, I have a consultation with my radiation oncologist. This will determine when we will start the five weeks of daily radiation to my right side lymph nodes. I am also dealing with back and leg pain, likely from tweaking something as I move gingerly and oddly after the surgery. It’s actually the most difficult issue for me right now.

Specific prayer requests:

(1) Back and leg pain will heal

(2) Arm function and range of motion will progress well

(3) Radiation side effects will be minimal.

Pictures today include my wonderful sister, my great-niece’s reaction to discovering moss on our walk today, and acquiring a Christmas tree last weekend with Megan, Luke, and Cliff. I am truly blessed when it comes to family support.

ypT0, ypN0, pCR…And Doing The Happy Dance

Following her release from the hospital last week, Carol has been doing pretty well. She’s been able to only use Tylenol for pain medication (big win) and has been slowly increasing her activity level – first 1000 steps, then 2000 steps and then 3500 steps yesterday.

I empty her surgical drains several times a day and watch the quantity go down with every measurement. The target to get a drain removed is to have less than 30mL per day coming out of that drain. Being a scientist/engineer-type, I did what comes naturally and plotted the rates and trendlines over time.

Today was Carol’s first checkup after her surgery last week. It’s been clear that her left drain was definitely ready to come out, but that her right drain wasn’t quite finished yet. So we drove down to the surgeon’s office expecting to have one drain removed and were waiting in the reception area when Carol got a text from her oncologist.

He wondered if she had seen the pathology report in her electronic chart yet (which she hadn’t). The pathologist hadn’t been able to find a single cancer cell in any of the tissue from the lymph nodes or the main tumor itself. Not one!

Image by ktphotography from Pixabay

We met with Carol’s surgeon and she confirmed the pathology report and talked about it with us for a few minutes. She said “you scored a home run” She was quite happy with my Excel chart of Carol’s drainage output (nothing like data to drive decisions instead of people who say that they “think it’s ready” but never actually took a measurement). She also looked at the incisions and was pleased with how Carol is healing from those as well. The previously irradiated skin is healing fine. She wants to see Carol in about another month as a last checkup from the surgery.

From a tumor staging standpoint, this makes her status at surgery as ypT0 ypN0. The “y” means that she had neoadjuvant chemotherapy before the surgery; the “p” means that it was determined by a pathology stain; the T and N are for the primary tumor (T) and lymph node (N) sites respectively; and “0” means zero evidence of any active cancer.

This is much better news than either of us had hoped for. Carol could still feel the mass of the tumor (it was 5cm in size) before the surgery, but the mass that was still there was just fibrous dead tissue. The chemotherapy and Keytruda did the job we hoped it would when we first started this process back in May. [SIDE NOTE: The FDA just approved Keytruda for use in advanced triple-negative breast cancer cases; Merck has applied for a broader approval that would be more for cases like Carol’s – that is still under review].

Medical oncologists call this kind of cancer stage as pCR (Pathological Complete Response) to the treatments they have been giving. Achieving pCR in treatments for triple negative breast cancer essentially doubles the statistical chances of long term survival from cancer from about 40% to around 80% according to a recent paper by Min Huang and coauthors in the American Association of Cancer Research.

By no means was this the last step in Carol’s treatments – she’ll still be getting physical therapy, radiation, and more Keytruda over the next few months (plus there is still another surgical drain to come out). But for now, it’s time to strike up the band and dance.

Casa, sweet casa!

As I mentioned yesterday, Carol is doing well and we had great hope that she would be able to come home today. After taking her Xarelto pill this morning at 7AM sharp, things continued to go well. Her surgeon had talked about letting her go at 3PM if she wasn’t having any excess fluid drainage, but stopped by at about 11AM to check on her.

After the exam, she announced that Carol could leave right away! We know the hospital is overcrowded and that they have better uses for a bed than to have it occupied by someone who is doing well and doesn’t really have to stay, so we were glad to get out and give them the space.

I quickly motored to the hospital and found her in a wheel chair manned by one of the orderlies at the hospital. We got her loaded into our car and put on a special post-surgical pillow that is designed to protect the wearer from the seatbelt after surgery – a very nice gift from Carol’s sister.

The ride home wasn’t the most comfortable, but Carol was willing to stop for a chicken soft taco – a bit of comfort food for lunch.

Mmm, tacos are delicious…

After lunch she finished listening to the audible book she had been listening to in the hospital (The Mysterious Affair at Styles by Agatha Christie if I remember correctly) and then took a nap. While she has some prescription pain pills, she has so far managed to stick to just extra-strength Tylenol and is hoping that will be enough to do the trick.

We did have one little scare in the early evening when we noticed that her upper right arm was blue.

Note the blue coloring on Carol’s upper arm…

Concerned that it might be some sort of hemorrhage or a blood clot, we called the surgeon’s office. We got a call back from the on-call doctor and sent over the picture that you see here. It wasn’t hot or hard and so we were asked to see if it came off with an alcohol wipe. Sure enough – it did and was just some of the stuff they used to clean Carol off during her surgery. It sure did freak us out for a few minutes though!

We’re glad she’s home. The next few days are just meant to be relaxing here at home – I’ll keep on top of stripping and emptying the surgical drains and we’re hopeful they should be able to be removed at our appointment with the surgeon next week.

Working the Plan…

View from Carol’s room

One of my boss’s favorite pieces of knowledge that he’s preached to our engineering team is “Plan the work, then work the plan.” The idea is to figure out what needs to happen, what the contingencies are, and then once you’ve got that done, execute it. It’s a good piece of advice for engineers, but it’s a good piece of advice for medical professionals too. And that is exactly the state that we’re in right now regarding Carol’s recovery from surgery.

We knew that her double mastectomy could have a lot of complications due to her medical history. Radiation damage that left one arm paralyzed and skin damaged, chemotherapy-induced mild congestive heart failure, and deep-veinthrombosis that lead to a recent pulmonary embolism are three difficult items to deal with individually when going through a surgery and Carol has all three.

Her medical team talked it out in detail about what they wanted to do and how they would approach each step along the way and came up with a pretty good plan. Now they are working the plan.

As everything went so well yesterday, the next steps were to try and keep blood clots from re-forming (which could be a very big problem) and at the same time not wanting to have any internal bleeding happen following the surgery. The trick here is to manage exactly how to re-introduce the blood thinners to Carol to prevent the clots but not so fast or in such a manner as to introduce the possibility of internal bleeding (also a big problem).

Given how well everything went yesterday, the surgeon decided to use a Lovenox shot as the first step in reintroducing blood thinners. Carol got her shot of Lovenox about 10am this morning and is doing well with it so far. She has had relatively little fluid coming out of her drains despite the blood thinners taking effect and that is a great sign. Lovenox is weaker version of blood thinners than some treatments and so it’s kind of a step along the way. It has a half-life in the body of about 12 hours, so it will be wearing off tomorrow.

Carol walked a couple of laps around the floor three times today at her surgeon’s request. Moving around helps keep blood clots from forming in a patient’s legs and it’s why they always want you to get up and walk after surgery. In Carol’s case, it’s doubly important. She isn’t supposed to overdo it, but two laps three times a day is the amount she wanted Carol to do and that seems about right for Carol’s ability to handle right now. She gets tired after two laps.

When she is lying in bed, she has intermittent pneumatic compression devices that periodically squeeze her legs – another technique to keep blood clots from forming. She finds it relatively easy to sleep despite the periodic “leg hugs”.

During the surgery, Carol got a shot of local anesthesia that took about 12 hours to wear off and she has only been using Tylenol so far to keep ahead of the pain. That’s also excellent news as nobody wants to be in pain and she definitely didn’t want to use stronger pain medications if she could avoid it.

Assuming she has no problems overnight, she’ll switch to Xarelto (her normal pill blood thinner) tomorrow morning at 7am. Xarelto has a half-life of about 24 hours and is much easier to control how effective they are than old blood thinners like coumadin were.

[Side note: coumadin levels would vary widely in patients based on what they ate and other environmental factors. Carol’s dad had to take coumadin for years and it was a constant battle to adjust his dosage to keep it in the right levels in his blood stream. I seriously think it must have been affected by the phases of the moon or the tides at times.]

If things continue to go well on Xarelto, Carol could be discharged as early as tomorrow afternoon. If her drains start an increased amount of flow, they’ll want to keep her overnight to make sure she’s OK. That’s the plan, now we’re just working it.