Welcome to Mary’s site. Please sign in to show your support.


View comments

Progress and Setbacks

So, it's been a while since I last updated--but honestly,  until this week, my care journey was pretty uneventful. With 8 of 12 Taxol treatments behind me, chemo has become a bit of a routine, with what appeared to be extremely insignificant side effects. However, I learned this week that the drug not typically associated with bad side effects (Herceptin) has started to take a silent toll on me.

I did switch to Anthem on January 1 and part of that involved starting up with a oncology cardiologist. She put in orders to start me off with a more comprehensive echocardiogram than I'd had with Kaiser--and that showed that Herceptin is attacking my heart. Fortunately it is likely an addressable problem--I'm going to take a 4 week break from Herceptin while I finish up Taxol. At that point, I'll take another echocardiogram and hopefully will be able to restart Herceptin treatments.

Another bit of bad news came unexpectedly in my first meeting with my new plastic surgeon, Dr. Davison. I'd noticed a small hole appearing in my port scar at the beginning of January. I've shown it to my nurses and oncology team and nobody could work it out--although they were confused by my continued port discomfort. Dr. Davison looked at it and immediately reacted disturbingly. My port was placed too shallow, so naturally it has hurt--and now my body is slowly expelling it. So, I'm not imagining the pain--if anything, my oncological team  indicated that I'd shown a great amount of pain tolerance. Dr. Davison also pulled an errant stitch out--which ended up starting up a big pain cycle, for some reason (I'm managing it with Advil). I'm scheduled for surgery next Thursday to remove the port and place a new one, probably on the other side of my chest. 

In the meantime, Dr. Davison also said I'm a good candidate for DIEP Flap reconstruction--essentially where belly fat is removed and used it to  reconstruct the breasts. He recommends it because it will leave me with more comfortable breast reconstruction, more natural appearance, and no ongoing periodic need for implant replacement surgery (which apparently will be more difficult when I get older). It's also the only way he can make my breasts into a C cup (Kaiser did over inflate my expanders, although he did note that the surgery was very well executed). On the downside, recovery from that will be much more difficult and the procedure will involve multiple surgeries, including one that will involve 10 hours and two surgeons (and, yuck, drains). I'm not sure whether to get a DIEP Flap or breast implants--I've got an appointment with a care counsellor from Inova to get an independent opinion. 

So far, chemo has been very easy. It is entirely pleasant taking infusions at Inova's new infusion center at the Schar Cancer Center--it's brand new and has a spa-like ambiance. They put me in a private room with a tv, good wifi, and a fully reclining chair--it's lovely. An added  bonus is that they pull my labs off my mediport while setting me up for infusions, meaning no extra jabs (and those extra jabs have become increasingly uncomfortable for blood return as I've proceeded in treatment). They did give me one infusion through my arm and they have this really incredible machine that visually finds the veins in my arm (see the photo above) so that the needle insertion felt less than a mosquito bite. Amazing!

Interestingly--due to my cancer, I've moved up in priority for a COVID vaccine (to Tier 1b), but despite that prioritization, I'm in one of the patient groups where my doctors believe the vaccine is counter-indicated, at least while I'm on Taxol. Taxol suppresses my immune response, which is what the vaccine is intended to activate. So, I can take the shot now, it won't hurt me, but it also won't provide me much protection from COVID-19. I'll just continue quarantining until I stop Taxol next month and my immunities return to normal. My oncologist wants me to get a vaccine as soon as I can then--but unfortunately, there's no confidence that vaccines will be available at that point. 

In the interim, wider COVID vaccine distribution has led to crazy traffic delays at the Schar, which is one building over from where they are giving out the vaccines.  I have to head in about an extra half hour early just to get into my parking garage (fortunately reserved for patients for regular treatments) in time for my appointments.  Pro  tip: if you are fortunate to get a vaccine appointment, bring a portable stool, some reading materials (or phone entertainment & headset), and dress for staying outdoors--you are going to wait in line for a very long time.

Another thing I look forward to is starting up are progesterone treatments--either by aromatase inhibitor drugs or by Tamoxifen--once I get off Taxol. While these will give me side effects (most notably more hot flashes) I feel strong and mentally ready for adjusting to that treatment (hahaha, famous last words). I read up on how progesterone drugs work and they have really impressed me how they are incredible metastasis fighters for women with HER+ cancer--more significant than even chemo. So, I am really motivated about starting up that treatment next.  

Overall, I feel much better cared for by my new medical team and optimistic in spite of the setbacks. The new team is identifying and addressing things that weren't noticed before. I am really surprised that I am experiencing insignificant reactions to the drug that is considered to have bad side effects  but the "mild" one is harder. I am so glad I didn't go for Taxotere and Carboplatin, which generate irreversible heart damage (my cardiologist said that was a very good choice).   I am still hopeful about finishing Herceptin and feeling more confident about my post-treatment prospects.

PS--I need to find a new primary care physician--anyone have recommendations in the Vienna-Fairfax area (I'm especially looking for one that has a responsive office staff)?

Show your love and support for Mary.

Make a donation to CaringBridge to keep Mary’s site up and running.


Goodbye Kaiser Permanente

Back in the beginning of my cancer journey, I was told that my insurance only covered mastectomy surgery on an outpatient basis. I became concerned that I could be at risk if my own surgery led to complications.  I requested post-operative surveillance in a hospital from both of my surgeons. I was rejected, but told I could remain overnight in the clinic on an outpatient basis, so long as I left before 5 am. Following surgery, I was told to go home upon waking, but I refused to leave.

Then, earlier this month, I started a chat with the Legislative Director for the Virginia Breast Cancer Foundation. We went over legislative priorities--and I asked if they could consider advocating law requiring coverage of post surgical hospitalization. I got a puzzled response--of course patients are entitled to hospitalization--it's been required by law in Virginia since 1989.

A few days later I received the annual copy of Kaiser Permanente's patient's rights publication. For the first time, I read it carefully. It cites Maryland law--but makes no mention of any patient rights required by Virginia law. It's written like Virginia has no medical laws at all--which is not the case. 

At the beginning of my treatment, I came to realize that Mid Atlantic Kaiser Permanente hides behind a quirk in Virginia insurance oversight.  The agency responsible for administering insurance in Virginia is the State Corporation Commission, which lacks institutional authority over organizations that don't have Virginia business registrations. Kaiser manipulates their Maryland entity registration to dodge compliance to Virginia laws. 

As a former legislative staffer, it left me wondering why the heck we bothered so hard to get laws passed if insurers like Kaiser Permanente could just ignore them. I have also worked on corporate staff for the two largest insurers in the US--and know quite well that this kind of egregious lack of corporate ethics is not typical in the industry.

At advice, I raised my concerns straight to the Virginia Attorney General, Mark Herring. Within a few days, a senior AG attorney reached out to me, indicating they are going to pursue Kaiser Permanente for enforcement. I do hope that this brings them under compliance with applicable Virginia health laws. 

I leave Kaiser Permanente care on Friday. I had my final chemotherapy session with them yesterday. 

Since my diagnosis, Kaiser Permanente's corporate office has lied to me and gamed the system to drag out my initial request for an independent second opinion until it was meaningless. Staff shamed me about being a difficult patient when I advocated for my own care. They abandoned my post surgical care when my primary caregiver was exposed to COVID-19. They forced me to take medical treatment against my will without informed consent. Now I also know that they illegally denied me necessary care I was entitled to--as well as countless other cancer patients in Virginia. 

While Kaiser Permanente does have competent medical staff, there seems to be something very seriously wrong with its institutional management. Patient welfare is significantly worse now with COVID-19 rules forbidding patient escorts (who provide valuable witnessing of medical transgressions). Additionally, by restricting care to outpatient facilities, they dodge the safety requirements of hospitals and lack the patient advocates/ombudsman services normally required for medical institutions performing major surgery. The only regulation they appear to comply with are Maryland laws (and only for  Maryland residents), thus putting Virginia (and possibly DC) resident members at serious disadvantage and deficit of care. 

Though getting a new medical team has been challenging, I am now certain I made the right decision to change carriers. Onward to better care in 2021.

In the meantime, please help me spread the word. All patients anticipating major care in Virginia should check their rights under Title 38.2 of Virginia code and make their care providers aware of their familiarity with applicable laws. I was lucky--I wasn't hurt as a result of missing mandatory post-operative care, but certainly other patients have suffered and possibly died as a result. 


Checking the Port, Another Chemo, Happier Heart, and Personal Care

This week has been a busy week medically (all while I'm back at work, too). I was booked for a port check--with possible surgery if it was adverse. Surgery meant all the necessary pre-op procedures. Once again Kaiser proved how lousy its COVID planning was. Through a rigid sequence of scheduling, I was forced to violate post test quarantine rules to comply with mandatory blood tests for my Friday chemo treatment. Oh well, bite me--I asked and nobody could give me a solution to that dilemma. On the other hand--Kaiser got all techno and is using an infrared/LIDAR body scanning camera for temperature measurement--a specific technology that I know is not intended for this use, not endorsed as reliable for COVID screening by the manufacturer, and probably giving them a new litigation risk.  It's a pricey bit of kit that I expect was bought with the money they've saved from denying me necessary care. I smiled at their pretty new toy with my secret knowledge and went on to hematology.

The team that tested my port on Thursday was the same team as did my port placement (which I really like the best of all the medical teams I've met in Kaiser). They took my pain really seriously.  After consulting with my chemo nurses, I decided to opt for full port removal if it was found to be leaking (a decision they recommended). On check in, the doctor indicated that he had to get my Oncologist's approval for that.  Shortly before testing, I was informed that she refused. No worries--I'll definitely get it out after I leave her care and Kaiser and finish Taxol.

This time, I was treated with pain medicines and a very fine needle was inserted into my port to set up a drip line. The nurse assigned to me was a visiting nurse, who somehow didn't get it in correctly, so another nurse set a new needle. I didn't feel it but somehow, I ended up with a surface laceration.  They pulled me into the smaller operating room (really a converted examination room), staged me with drapes and injected dye. I really didn't feel much, except slight discomfort throughout (possibly from my new cut). The PA quickly took a couple of x-rays and determined (to everyone's relief) that it was not leaking. Procedure ended, lines pulled, and Rick picked me up, although the meds knocked me out for the rest of the day when we got home.

The operative PA's verdict: my pain is due to the injury to my pectoral muscle and the persistent heavy bruising over the port area (which is inexplicable three weeks after surgery). She indicated that I have stabilizing tissue, so she gave me permission to start moving with weights (at the a gradual scale to be determined by PT) since their review of the imagery leads them to feel that the injured muscle is interfering with the port (although fortunately not causing it to leak) and the only path to recovery is weight bearing exercise.

Today I went to chemo and then had a echocardiogram afterwards. The nurses don't understand why I experience so much pain with my Taxol drip but ended up giving it to me very slowly to get it to a manageable level where my blood pressure wasn't soaring. Going forward, they recommend I only take it intravenously because it's faster and completely painless (I guess I must also be an easy stick). That sounds much more appealing, but I feel I need to discuss it with my oncologist since she had refused the port's removal (because, well, Taxol). Otherwise--not eventful. I gave the nurses an extra KN-95 mask I'd ordered from HonestPPE and before I knew it, they texted for a front line provider's discount, and did a massive group order (apparently they'd heard very good feedback from doctors about the masks as well). 

Three doses of Taxol infusions complete, nine to go. I'm not counting Herceptin, because I haven't been able square off how many treatments I will need after Taxol ends (once every three weeks does not divide evenly into the remaining nine months). I am still not facing significant side effects--very little hair loss (just slightly receding temples), though that is frequently a delayed response. I have very dry, flakey skin everywhere (I am a full body dandruff machine) but no uncomfortable skin disorders. My constipation is now managed by medication and insignificant. I think the steroids are making me hungrier. I gained 3 lbs the first week, but have managed to stay steady last week, which I'm good with. Fortunately, going forward, I will only receive 1 steroid per Taxol treatment (down from 10), so I'm hoping I can stabilize at this weight. Overall, it's pretty easy going.

Finally, there was the echocardiogram. They sent their report to me shortly after I left, but I could see that the tech was  happy with the results when she indicated that she needed it externally validated before releasing the results. Somehow, it came out that my heart output--which previously had tested as marginally poor--now rated comfortably in the normal range. I know that scoring echos has a subjective element--and that there is nothing that has happened in the past three months (other than a lot of inactivity due to my post-operative status) that should have so significantly healed my heart. Maybe it's abstinence from caffeine (which I had a lot of), alcohol (not drinking much beforehand) or weight loss? My gut feeling is that reality might be somewhere between the two echo measurements. Still, it is very good news, as Taxol is super hard on the heart and it gives me hope that I might be able to end chemo without developing permanent heart disease.

On the personal care department, I ordered two synthetic wig on sale last week from Uniwigs that arrived Monday morning. One looks convincingly like my old hair (but much better styled), so it's a winner, especially for work. For a lark, I also got a grey hair wig and it's also pretty fabulous looking, though given my inherited trait from my mother's family (that photo I posted in an earlier post of mom was of the virgin hair she had in her 80s), probably never going to naturally happen to my own hair. 

I also pulled out my bra sewing materials and took stock, as I want to make some soft stretchy bralettes for sleeping (sports bras are not especially comfy then and I know I'll get a better fit if I sew it myself). Most of what I have are stiffer fabrics for underwire bras. So, I went on Etsy and ordered some fabric kits. Unfortunately, underwire bras are not generally recommended for reconstructed breasts, although oddly my plastic surgeon has no issues with corsets and stays (even now). However, I will be switching plastic surgeons in January--and in reading about the second surgery, I will be able to consider reconstruction options not allowed by Kaiser Permanente, like more natural teardrop shaped implants or filling my breasts with tissue taken from another part of my body (typically tummy fat) instead of implants. There are pros and cons about these, but yay for options! 





Chemo Week 2 and Thanksgiving

Today's chemo was much like the first, except last week I received larger "loading" doses of the chemicals than this time--prospectively meaning quicker infusions from this week on. However, I continued to have mediport pains throughout the week and reacted to the initial injection of saline in my port. The administering nurse got the head nurse, who reinserted my port catheter--and we started Herceptin. That went ok, though uncomfortable. Then we moved on to the bag of Taxol--and a few minutes later, I started getting sharp pains, just like last week. The nurse immediately disconnected it.

With that head nurse and my nurse from last week were called back over and the head nurse decided that they should not use the port until it is validated as functional by Interventional Radiology (ie, the staff responsible for the port placement). We discussed my PT doctor's concerns about my pectoral muscles. The nurses think that muscle disorder might be a contributing factor, but they are concerned the port is leaking and don't believe it is safe for chemotherapy infusions until it's proven to be leakproof. They then administered the second (Taxol) infusion by a regular iv in my arm--and OMG it was much more comfortable than even my first infusion of Herceptin! I went back to another documentary and icing my hands and feet.

Overall, with the exception of the port (which, honestly, gives me intense chest pains sporadically every day, even without infusions), my body appears to doing really well with Taxol and Herceptin. Last week it hit me on the Sunday and Monday following chemo, with an impact of feeling quite tired and some incontinence. These are super manageable symptoms and not actually uncomfortable. 

However, I did have one liver function score elevate out of range in my Wednesday blood test--I emailed my doctor, who responded asking if I had been drinking alcohol (um, not for quite a number of months). Fortunately the nurses picked up today when reviewing my medical record--it's a score that Taxol always throws off immediately, the impact is temporary to the treatment period, and so long as I stick to safe foods (and yeah, no alcohol), it shouldn't be a concern. 

The nurses felt favorable about my Taxol response--they said while side effects might increase over treatment, the people who experience the worst tend to start off badly. I am concerned that if Taxol leaked when it was administered last week, I might not have experienced the impact of full dose--troubling in a couple of ways. But, I'm hopeful--and rinsing my mouth with baking soda at every possible opportunity.

Two down and ten more sessions left in my initial high-intensity chemo cycle!

We had a fun Thanksgiving. It started with an online flower arranging class through Alice's Table with my sisters and I vibing our inner Martha Stewarts as we designed our holiday table decor. Thursday Rick and I slept in, cleaned house, and spent 15 minutes cooking our dinner--in the microwave! We had it catered (as we are having every meal during my initial chemo catered) and it was delicious! Finally, we ended the holiday with a live family game show Zoom call, which was a terrific blast! 

It's kind of funny--while everybody says I had a rough 2020, I've felt I have been experiencing an unbelievably lucky year. Losing Mom so unexpectedly was definitely rough--but I feel increasingly that it was almost Homeric. We couldn't alter the trajectory of her fate, but we were able to make it more acceptable to her and ourselves. Her spirit lives inside my brain and we still have long discussions. She also blessed us with her commitment to Swedish Death Cleaning (which I teased her about when she got the book after our trip to Stockholm)--everything was in perfect order and there was little to deal with.

Cancer was also an odd blessing--I am blessed that my aggressive form of cancer was discovered at early stage. My diagnosis also came while Mom was able to pass her wisdom and medical files over to me in her last three weeks of life. Cancer also grew very little between (early) detection and removal. It also left me blessed by the most amazing support of friends, coworkers, and family whom have left me so very grateful for all the calls, texts, flowers, handworks, care packages, virtual hangouts, and just chats. Cancer certainly is something I want out of my body, but I can't say I've fully regretted how the experience it has tempered and distilled my life. It has oddly given me both confidence and tranquility. So, it's been a year of unexpected blessings!


First Chemo

Despite trepidation, I started chemotherapy yesterday. I am taking twelve weekly infusions of Herceptin and Taxol, followed by another nine months of herceptin taken every three  weeks. 

In preparation, a little over a week earlier, I had a port placed inside my chest. That ended up being a lot more uncomfortable than I expected, but it's generally not painful, either. The biggest inconvenience is that my physical motion will be impeded for the duration of my chemotherapy, though nobody has explained what motions I need to avoid. 

Meanwhile, I did manage to get ELNA cream prescribed to me. Frustratingly, the tube had a very difficult child protection cap and to press it in, I had to put pressure on its sides, so when it opened, half the medicine sprayed out on the counter.  Oh well.

The night before chemo, I had to eat dinner at 7 pm and take 5 steroid pills. The next morning, I woke, started by taking 5 more steroid pills and breakfast at 7 am, then 2 Pepcid and 1 Zyrtec tablets at 8. I also put on a layer of ELNA cream on the port site and covered it with plastic wrap.  I packed my ice packs, lunch, snacks, devices and warm clothes (for wearing when wearing ice packs).  At 9 am, I got to Kaiser.

Going in, the nurse walked me to the station where I would be treated. I set up my laptop and connected it to the mobile hotspot on my phone. He kept me busy with preparation procedures.

We also checked the chemo formulation--my oncologist had incorrectly ordered once every three week doses of Herceptin (vs. weekly) during the first 12 weeks,  but in discussing it earlier in the week with the oncology triage nurse, we found the error. The doctor was adamant that she ordered it weekly, so I followed up with the nurse. Fortunately, late Wednesday, the nurse emailed that she got the doctor to correct the initial dose to reflect weekly infusions.  Too much drama, but my chemo nurse validated that the dose was correct before we got started.

Shortly after 10, it was time to get started and the nurse connected to my port to an external catheter. That was a sharp sting, but that pain quickly subsided. After they flushed the line with saline, I first started with Herceptin,  the more mild drug. That infusion filled my chest with a dull, steady pain. I reported this to my nurse and he  responded that this is typical of initial chemotherapy treatments. Apparently, that pain will go away in future infusions. Still, it was not a disturbing amount of pain--pretty insignificant. An hour later, my solution was drained and I got a 45 minute break before starting Taxol. 

Taxol causes neuropathy, so I had brought in icepacks for my hands and feet. The ones on my hands quickly had my hands painfully freezing and the deputy nurse told me to not let them fully freeze--to take them in and out of the freezing mitts. I settled back with a streaming documentary and they hooked on the Taxol. 

Taxol was different. There was no steady pain, but soon I started feeling periodic sharp pangs that radiated through my whole chest. I was moaning apparently, but the nurse thought I was overchilling my hands. Finally, he came to check me twenty minutes in and I asked him whether these stabbing chest pains were going to reduce when I get future treatments. He responded quickly, instantly lowering the flow,  examining my chest for a rash, and taking my temperature. Fortunately, I didn't show any other signs of rejecting the infusion--and with the slower drip rate, the pain went away. However, my blood pressure zoomed as a result, but resolved itself ten minutes later. Two hours (and one more history documentary) later, the drip was exhausted. I continued chilling my hands and feet for fifteen more minutes while they flushed the port with blood thinners and saline, then packed up my stuff and left at 3 pm.

People have asked if I could feel the drip. I think I would have if I took it through my arm, but in my chest I couldn't feel it at all. It wasn't cold--in fact, they kept the room extremely warm and layered warmed blankets on me when I started icing my hands and feet.

Most of the other patients slept during their infusions, but I wouldn't have been able. First, most patients have their medications mixed with Benadryl to make it easier for the body to accept it. Knowing I would have to drive home, my doctor substituted Zyrtec, which had a much less drowsy effect on my body. Also, the two nurses kept me busy with frequent checks and repeated monitoring of my blood pressure and temperature. Plus, I was hopped up on 10 doses of steriods! That said--and maybe because of the stress of it all, I was fatigued. About an hour after I got home, I took a 3 hour nap.  Then afterwards, I couldn't fall asleep until 2 am--but no worries, I slept in late! Fortunately from here on in, I'll be taking much fewer steroids.

Generally, the body takes 24 hours to respond to chemo, though it can take as much as 48 hours. So far, I have felt no side effects and have not discovered any signs of neuropathy. I did get a good blue bruise over the port site, but chest bruises are kind of becoming normal to me now. Next  week I should start losing some hair (though there's not much to lose). All in all, it was kind of boring and even with the Taxol pain, totally worth it to kill off the remaining cancerous buggers in my body. I know that this will become tougher over the next twelve weeks (Taxol side effects are cumulative), but right now, it's more boring than anything.  







A Shocking Transformation!

My sisters both urged me to look into getting a wig made from my hair, so I started investigating places that do this. It turns out, there is an organization, Compassionate Creations that does this for women facing medical hair loss--cheaper than human hair wigs cost at most commercial wig shops. 

So, I booked an appointment with one of the directors and decided--why not? It's partially covered by insurance and I have sufficient Healthcare Spending Account funds (yes, I really had a provisional cancer fund set aside) saved up for the uncovered cost. Better yet, a wig from my own hair will give me a long term solution, especially if I have hair thinning problems later on in life (as my mother did). But I needed to cut the hair quickly, before chemo starts a mass shedding.

The process of cutting hair for a wig was surprisingly complicated! Fortunately, my friend Heidi is a hair stylist and had time to meet me in her salon (Salon Khouri) yesterday to take it off. I arrived saying something I've always wanted to say at a salon, "I'm sick of this hair so just take it all off!" She did just that and it was so fun! 

Now I have to confess. I am not particularly attached to my hair. I had long hair merely because of pure laziness. It isn't probably the most flattering look on me, but long hair is so easy. I generally wash it every ten days, blow it out, and it looks fantastic (my before photo below shows me 3 1/2 weeks without a shampoo). That's it--I can tie it up and forget it. I'm blessed that it is practically maintenance free--I don't need to dye or straighten it and it's always presentable.  Last spring my scalp started getting sore when it grew to my waist, so I cut about 8" off and stopped wearing ponytails (nobody noticed the haircut). Still, up until my diagnosis last June, I was thinking of getting it cut into a long bob. So I had no tears deciding to shave it off, though I was super curious what my bald head would look like.

After sectioning the hair into a kagillion (yes, that's a technical term) 1" squares,  wrapping each section up with an elastic, Heidi chopped the little bunches off at the root. When it was done, I ended up with a scraggly buzz cut--oh my gosh, so terribly cute! Like having my hair pulled back, but with volume! We went on to shaving and it looks wonderful! It was also surprising how light my head felt. It also makes me look younger! The only downside is that my head gets cold extremely fast now. How do bald people deal? I think I will be keeping it covered 24/7 (though I might enjoy that gardening in July, provided I have sunblock on)! Thank you Salon Khouri and Heidi! 

I pulled on a wig (blonde, hah!) and got an instant transformation (and a warm head). On the way home, I stopped at Kaiser Permanente to pick up medicine and nobody blinked at my blondeness! I'm looking forward to rocking more wigs, hats, big earrings, and scarves!

All in all, I feel so good about taking control of this part of my cancer journey--no regrets. Plus, in two months, I'll get my real hair back! I'm just wondering whether I'll ever grow it long again?

So, I'm pretty much all set for chemo tomorrow. I am planning to keep my hands and feet in ice (to limit neuropathy), so I have a bunch of frozen cold packs (for hands and feet) ready to go. I have a few snacks, lunch, and I am charging my devices to stream lots of movies (and such), since my starter dose is going to keep me in a lounge chair all day long (and I won't be able to read or do handwork most of the time due to the ice packs). In the meantime, I was able to get a prescription for ELNA cream (which is supposed to be better) to numb my mediport, even though lidocaine wasn't available. 

In other good news, my plastic surgeon gave me thumbs up to use OTC lidocaine to control the nerve pain in my chest and I started physical therapy. Together these have significantly improved my comfort, although I am still bruised from the port surgery (one thing this has brought home is that I bruise extremely easily). 

Finally--back to work on Monday! I can't wait. It's good to start getting back to normal.


Port Surgery and Chemo Prep

This week has focused on getting ready for chemotherapy. On Tuesday, I met up with my new oncologist, Dr. Rizzo--and aside from Inova's refusal to submit an insurance claim to Kaiser Permanente (unfortunately preventing partial reimbursement), it went well. I was favorably impressed by the thoroughness of Dr. Rizzo's review of my medical records. She also did something my current oncologist didn't do--she went through the pros and cons of every possible chemo option. In the end, she indicated agreement with the decision of Taxol and Herceptin instead of Taxotere, Carboplatin and Herceptin, saying that the toxicity of the latter treatment outweighed any benefits from the harsher treatment. She also did a physical exam of my breast and found most things going well so far. I left with homework--to check on coverage of a new injectable (quicker and more comfortable than infusion) form of Herceptin in my new insurance company's formulary (oh well, not covered, too bad) and to get the Hepatitis B tests required by the chemotherapy clinic (apparently already ordered).

Over the past week, I also investigated cold caps. This is a therapy that might save some of my hair. However, it requires wearing an extremely painful cap for long periods of time (essentially, the idea is to maintain a thin layer of ice over the scalp for extended hours). Beyond the hassle of needing to get dry ice early in the day before each treatment, members of my group said that it made their chemotherapy experience more painful and miserable--and they all still lost most of their hair. I discussed it with Rick--I really don't care that much about losing my hair for a few months and there are wigs, so I'm not going to try a cold cap. However, I did get ice packs for my hands and feet to preserve nerve function there.

Thursday was the date set for my mediport installation surgery and late Tuesday afternoon, I got a frantic message from a radiology nurse, requesting that I get my bloodwork done. What bloodwork? Nobody had mentioned that, so Wednesday, I went to the clinic to get blood drawn for that and the mess of tests my oncologist had ordered. When I arrived there were no orders from interventional radiology. The laboratory called them up and then they drew a huge draw to cover all the tests ordered (particularly by my oncologist, whom I think ordered every conceivable blood test). The only glitches seems to have been scheduling related--and easily resolved.

The next day I woke up early, swished out my dry crusty mouth with a sip of water that I spit out (no swallowed liquids), braided my hair flat in the back, and dressed in yoga pants, a loose fitting front buttoning shirt, slip on flats, boy-short underwear--my surgery uniform, since it's easy to deal with afterwards. I was pretty bleary eyed when arriving at the clinic at 5:45 and took a quick selfie to post on Facebook. To be honest, at that moment, I was pretty nervous, since I had been told I would be awake for the duration of the procedure, which freaked me out a bit.

I was met by my assigned nurse (she stayed with me, while the other staff stayed with the operating room), changed into my surgical gown (one thing that doesn't make sense--why do they make patients get into back fastening gowns for front facing surgery?). They also had me hand over my phone and remove my glasses, and I ended up waiting 45 minutes for my turn in the operating room.

In the meantime, my nurse set monitor tags on my back, put in a catheter in my forehand (usually pretty painless, but oddly this time it stung slightly), and set up the medications to be administered to me in surgery. The surgeon and physician's assistant (PA) came, discussed my anesthesia and walked me through what steps they would take through the operation before having me sign my informed consent form. I have to say, this team was more professional at their patient briefing than my previous operation team--it was really efficient but effective.

At 7 am (exactly) they rolled me into the operating room. The room was really surprisingly modern, larger than I would have expected, and full of machinery. Lady Gaga was singing Poker Face and one of the staff was dancing to the song. There was a sliding x-ray machine that they slid over my chest to validate correct catheter placement, a huge (like 65") monitor at my feet showing my vitals and video views and high intensity lights over me in the ceiling. My admitting nurse monitored my vitals from a computer station to my side while the PA and a tech got to work cleaning the operating site, connecting me up to my IV, positioning and draping me, and getting equipment ready for my procedure. 

Interestingly, the PA performed the operation while the surgeon observed in a glass observation room to the side. Apparently she is more skilled at the fine motor skills for the procedure, so he lets her do this. First they added an antibiotic to my iv and I could feel coolness radiating through my arm and into my body--a rather pleasant sensation. At 7:15, they were ready. They asked me how much anesthesia I wanted and I indicated I would prefer to be put as much out of things as safe. Then they gave me a "3" level of the mix of narcotics and tranquilizer. I felt the medicine radiate into my arm and then lost memory.  Apparently I was slightly awake, they gave me lidocaine and did the operation. My memory came back twenty-five minutes later when they eased me off of the dose, unplugged me from the machinery, and helped me move back onto my gurney.

Post surgery, I had no chest sensation, due to lidocaine still being active in my chest (frankly, the first time since my mastectomy that my chest area hadn't hurt at all). The nurse I started with instructed me to avoid stretching/lifting movement for at least a week. The idea is to develop scar tissue to hold the port in place so the catheter does not slip out of the vein. I received a wallet card, key fob, and bracelet to identify my port and was told not to shower or get my wound wet for a few days. Hopefully, by the time I get chemo next week, the wounds will be largely healed. 

So, all in all, a pretty easy procedure. I was tired when I got home, but managed to stay up until sacking out in the late afternoon. Some light nausea, but not bad, considering I was coming off narcotic medicine (which I tolerate poorly).

The port is uncomfortable and increasingly painful now, but so far tolerating it is manageable with ibuprofen and acetaminophen. It gets in the way when I swallow certain things or try to talk loudly (something I noticed when telling the cat to stop scratching furniture yesterday). That apparently will go away shortly. Mostly I feel that between this and the expanders, my chest has become full of uncomfortable alien hardware--kind of like a bad science fiction story. On the upside from here on out (provided we beat this cancer, which I think we will) all the remaining surgeries will be to take me back to normal...I am really looking forward to the ones that take this hardware out!

My last prep is to finish my mandatory chemotherapy education video, which I'm going to try to do today. It is long (almost 2 hours), slow, rambling, and boring. I keep falling asleep watching it. Fortunately I am mostly through it, but honestly the useful information could have been provided in a half page handout that I could have read in 2 minutes. 


Parsing Chemotherapy Regimens and Expander Update

So, a week ago, my oncologist left me with a very short three line message indicating that my oncotype score was high and that I should take a more difficult chemo regimen--Taxotere, Carboplatin, and Herceptin (TCH). I was not able to get into meet her until Wednesday, so I got to researching the drugs. As I learned more about them, they left me with an increasing sense of dread...

  • Three drugs causing heart damage, two irreversible;
  • Permanent hair loss in 16% of patients;
  • Reports of permanent loss of sense of taste; and
  • High nausea and frequent vomiting throughout treatment.

It was all pretty scary stuff--and the permanency of many of these side effects left me wondering about losing two of life's joys after treatment ends. That helped foster a bit of a binge on candy corn on election day.

 A close friend who works as a doctor called to check up on me (and to dish on the election) on Tuesday morning and I spilled my apprehensions. She was disturbed. She was familiar with the drugs and knew some of them were recommended for advanced cancer--and not typically used with the limited early stage cancer that I have. She encouraged me to reach out to my mother's oncologist and get a second opinion--immediately. 

So, I sent my mother's doctor an email. She responded in a few hours that the National Comprehensive Cancer Network treatment protocol for post surgical treatment of HER2 positive stage 1 cancer (with no affected lymph nodes) is always Taxol and Herceptin (TH). She also sent research from a major study that confirmed the effectiveness of TH. One of the papers from that study specifically considered the effectiveness of TCH (the combination my oncologist advised) and determined that the higher toxicity offset the minimal benefits against future cancer growth. In other words, significant numbers of patients died from the cure before living to enjoy benefits that were only marginally better than TH. She also advised against basing HER2 positive treatment on the Oncotype DX test results.

With that, I was positive that I didn't want TCH treatment, but that put me in a sticky situation. I feared my doctor would not even consider revising the drug regimen. I looked forward to Wednesday's appointment with her with dread, only exacerbated by anxiety over the slowly emerging election results.

As it turned out, my nervousness was misplaced. I told my oncologist that I spent the week researching and that what I learned left me with apprehension over the TCH treatment. She immediately volunteered "oh, then we can go back to Taxol and Herceptin."

I felt so much relief. We started planning out treatment and she advised weekly doses for the initial twelve weeks  (rather than larger doses every three weeks) to reduce side effects. I have mediport surgery scheduled for a week from today and start chemo on November 20.  I also meet my new oncologist on November 10.

I am now feeling quite happy about treatment. The cardiac risk is more manageable and has been vetted by a cardiologist. Yes, twelve weeks of Taxol is extremely likely to make me lose my hair, but it won't be permanent, and I am looking into paying out of pocket for cold cap therapy that could save some of it. I am also likely to lose sense of taste, but that is temporary, too--and I have been working with a nutritionist to help me manage my diet as I lose weight and go into cancer treatment.  Nausea should be much more manageable and customary chemo side effects will occur at a much lesser extent than with TCH. By using smaller doses, managing chemo at the end of the initial twelve weeks should be easier (though I'm sure that I won't be thinking that when I am dealing with a high cumulative level of chemicals in my body).

I am praying my body will tolerate this treatment, but it should be far easier than TCH.

In other news, my plastic surgeon pulled me in to the office yesterday for a quick visit to have nurses remove the sutures I could not reach and to look at a soft lump on one side of my right "breast".  After the nurse finished with the sutures, my plastic surgeon popped in to make a quick examination. The lump is a slight fold in an expander--nothing to worry about. In a little over a week, I'll start PT on my shoulder (and I have started some light exercises that appear to be managing the shoulder so it doesn't get worse).

On the other hand, the chest pain is continued (and growing) muscular reaction to my expander fills and nerves waking up. It gets unbearable after walking a block or two and sitting upright for great duration can get quite painful. Fortunately, the pain subsides when I rest in a lounger and manageable for sitting with Tylenol and Advil (I feel like a junkie with these). According to friends in my cancer support group, the pain will go away, so I am quite relieved. However, I am surprised that my cancerous breast--which had a lymph node also removed--doesn't hurt much. Perhaps more nerves died there? My oncologist asked about the expanders as well, advising that I should keep in mind that I am a very small framed woman and that from what she could see, the expanders sit larger on my chest than most (post-fill, there is no space between my "breasts" at the front and expansion goes all the way back into my armpits (the temporary side boobs are disconcerting)).  I might have more to adjust with expanders than most patients do. 

This all feels minor and manageable, though I really can't wait to get out walking and even more than that, doing more with my arms. I feel that I have a very strong body yearning to get back in action. It's a perfect warm fall day, so I hope to sit out in the garden (or porch) and do research on cold caps. Now if the election resolves in a way that dedicates the country to managing COVID-19 (which if I catch while  on chemo, will kill me), protecting my insurance coverage, and correcting the abominable wrongs of the past four years, I will feel rather blissful.