Billing Woes

Back in October, around the time that Pa died, Stanford sent me a bill for $324.52. This was odd because I had already paid my max out-of-pocket for the year. When I looked into the claim, it showed an NPI number (National Provider Identifier) for a doctor I've never heard of and was out of network. That's why Cigna only partially covered the claim.

My doctor's name is Jennifer L. Caswell-Jin. The doctor on the claim is Jennifer L. McNally. Same first name and middle initial. I remember having to make several phone calls to Stanford and Cigna and spending a lot of time on hold. Stanford finally agreed to review the claim. I believe I also asked Dr. Caswell about Dr. McNally, and she had never heard of her.

Stanford never got back to me, and the bill disappeared from my account, so I thought they fixed the problem and resubmitted the claim to Cigna. But this morning I received an email about the bill. It's back on my account. Stanford's billing department is closed today for the holidays. I called Cigna (and got a poor Filipina working on Christmas Day). They confirmed that the claim was not resubmitted.

I will have to try Stanford again on Monday. They'd better be open then. If they still give me problems, I can call Cigna and request a 3-way call with Stanford.

Update: The problem was on Cigna's end and has been resolved.

Kaiser Switchover Complete

My insurance coverage with Kaiser started on Nov. 1. I selected Dr. Zhuo as my PCP because I liked her  profile on the website. I had a phone visit with her on Nov. 8. She referred me to the oncologist recommended by someone in my support group. I had a video visit with Dr. Chuang on Nov. 17. 

That same day I also had a video visit with an endocrinologist, Dr. Vu. Unfortunately I could not get an appointment with Dr. Joan Lo in Oakland, the endocrinologist recommended by my Stanford endocrinologist. Dr. Vu said I could continue with the 3 mg Zometa dosage I received at Stanford.

On Nov. 21 I went to Kaiser Santa Clara for a blood draw. Unlike at Stanford, Kaiser does not do the blood draw on the same day as the infusion. That means I have to get poked with a needle twice as often. 

My infusion was the next day. The infusion center has only a few private rooms. Most have beds, but those are given only to patients that need a bed. Only two rooms are available to healthier patients. I was lucky and got a private room, but it was tiny and had a reclining chair instead of a bed. I prefer a bed because it makes it more convenient when applying ice packs to my hands and feet to avoid neuropathy. 

Overall the transition to Kaiser went smoothly, and my infusion was delayed by only five days. I was expecting a two-week delay. It's nice that Kaiser is only 5 minutes away, and they don't charge for parking.

Goodbye, Pa

Pa passed away on October 15, Ma's birthday. Even though he had been in declining health, it was still unexpected. At least he died peacefully.

His funeral Mass was on November 13. It took a while to do the service because the funeral home was still backlogged from covid. Yesterday we interred his ashes in the same niche holding Ma's ashes. We were afraid it would take weeks to do the cremation and that Kit & David would have to leave before the ashes were ready. The funeral home may have helped expedite the cremation when we explained about Kit & David.

This was the eulogy we included in the program we handed out at the Mass.

Dr. Cipriano Medina de los Reyes, Jr. of Hercules, California passed away peacefully on October 15, 2021, on the birthday of his beloved late wife, Tessie. He is survived by his daughters, Marisa, Lou and Kit, and his grandson, David.

Cipri or Doc, as he was known to his friends, received his medical degree in 1952, got married in 1957, and moved to the US in 1974. In 1982 he settled in California where he had a private practice until he retired last year at age 93.

He was a man of great faith who lived a long fulfilling life. He attended church daily and was active in the Filipino community. His faith was such that after his wife died, he would say, “God has a plan for me.”

Cipri was a man of great creativity with music as his passion. An accomplished piano player, he played the piano daily and loved entertaining guests with his music.

He loved his family, friends, and patients, and he was well loved by everyone who knew him. He was a beloved physician, a devoted father and a faithful husband. He will be sadly missed.

Ma & Pa's wedding picture has always been one of my favorites.

Switching Health Insurance

When I got laid off in March 2020, I was able to continue my group health insurance with Cigna due to COBRA. I had to pay the full cost ($710 for health, dental and vision; the health insurance part is $640). This year, due to the COBRA premium subsidy of the American Rescue Plan, I did not have to pay the monthly premium from April through September.

COBRA, however, is good for only 18 months. I will have to switch health insurance starting November 1. When I looked at Covered CA (AKA ACA or Obamacare), very few of the plans included Stanford and none included my oncologist. Only a few plans through Blue Shield included PAMF where my PCP is and where I was first diagnosed with cancer. The premiums (over $500/mo) and out-of-pocket maximum (over $8000) are expensive. The best I could find was through Kaiser with a monthly premium of ~$85 and max out-of-pocket (OOP) of $6500. The premium is unusually low because of a subsidy, but the OOP is still high.

My problem is that I've already paid the OOP for Cigna. But because the health plans are by calendar year and my infusions are so expensive, I will have to pay the OOP for Nov-Dec on the new plan. Then I will have to pay the OOP again in January for the 2022 calendar year. $3000 + $6500 + $6500 = $16,000. In addition, my HOA has a special assessment of $6,600 due in January for roof replacement. $16,000 + $6,600 = $22,600. The high cost has been upsetting me for a couple of months. 

The good news is that once I submitted my application to Covered CA, a new plan I'm eligible for popped up. It's still with Kaiser but the premium is subsidized and costs only $1/mo, and the OOP is only $1000! This is very welcome news. The subsidy is also through the American Rescue Plan and is supposed to be good till December next year.

Once I get my Kaiser membership card, I will have to find a new PCP and get a referral to an oncologist so that I can continue my treatment with minimal interruption. I also plan to get dental and vision insurance.

Chemo curls

Hair often grows back curly after chemo. Mine is definitely wavy. This is about five months of growth. The curliness is temporary, lasting 6-12 months, sometimes longer.

I think I have way more white hair now. Looks like I still have dandruff. It's not just my body that's experiencing dry skin but also my head. 

Jury Duty

I received a jury summons. While the court claims to enforce six feet of social distancing, their video about covid precautions shows that the seats in the jury box are not spaced far enough apart.

When I talked to my doctor last week, she said I'm moderately immunocompromised. In my response to the court online, I asked to be excused and uploaded a letter from my doctor. Now I wait to see if they accept or reject my request.

Zometa Side Effects

At my every-three-weeks infusion Friday, I was given a new drug, Zometa. It has a long list of side effects: dizziness, headache, flu-like symptoms (such as fever, chills, muscle/joint aches), cough, vision problems, diarrhea, constipation, tired feeling, joint or muscle pain.

The side effect I was most concerned about was dizziness. But my doctor was most concerned about pain. I was given Tylenol before the infusion and directed to take more when I get home. The infusion lasted only 20 minutes. I felt fine in the evening, just a little bit tired.

The next morning I went to the farmers market. After I got home, I felt very tired and had to take a nap. That's when I got the flu-like symptoms. I didn't feel well at all and was shivering even though I didn't really feel cold. I didn't bother taking my temperature because I had taken Tylenol.

In the afternoon I got up to eat and attend my support group session. After the session ended, I went back to bed and slept fitfully till the next morning. At one point I woke up and noticed muscle pain in both arms, joint pain in the fingers of my left hand, and muscle pain in both thighs. Thank goodness I took more Tylenol or the pain would have been worse. 

Most of the pain was gone by morning. I still felt tired but was fine after a few hours. The side effects lasted 48 hours. My doctor said they usually last 24-72 hours.

I will get Zometa every six months.  The dose I was given was 3 mg, which is what the endocrinologist suggested a couple of weeks ago. The good news is that the side effects usually happen at the first infusion only. But not always. For some patients it happens at every infusion. 

Endocrinologist Consult

My next phase of treatment is to take an aromatase inhibitor (AI) pill daily for 5 years. AI causes bone loss. Since I already have osteoporosis, I will be given an IV infusion of a bisphosphonate called Zometa every 6 months to minimize bone loss. However, side effects of bisphosphonates include atypical femoral fractures (AFF) and osteonecrosis of the jaw. 

The risk of AFF is higher for Asian women, and that's what I'm most concerned about. I had a visit with Dr. Deborah Kado at Stanford yesterday. She said I should be more concerned with hip fracture than AFF. She recommended the following. I'll just paste what she entered in the visit notes.

1. Agree with recommendation for IV Zometa for 3-5 years, particularly if she is to start an AI. Given patient's body size and Asian heritage (that is associated with increased AFF risk per Kaiser Southern California data as well as Canadian data), may consider a slightly decreased dose of 3mg every 6 months instead of 4 mg (though there are no trial data to support this recommendation). Asian treating MD's from Taiwan, Toronto and Japan have recommended decreased bisphosphonate doses in Asian females because of the elevated AFF risk. 
2. Vitamin D3 supplementation, 1,000-2,000 IU daily; may recheck level in about February (target is 30-50ng/mL of Vitamin D 25-hydroxy level
3. Calcium intake up to 1200 mg daily, preferable through dietary sources (see sources below)
4. Diet full of daily fresh fruits and vegetables
5. Work on balance daily, mindful of posture 3 times daily (see handout below)
6. Visit the dentist regularly, and floss daily
7. When move to Kaiser (possible plan), recommend Dr. Joan Lo to follow-up on osteoporosis clinical care. 

I will probably take a break from Zometa after 5 years. My Vitamin D level last January was 32. The balance recommendation is probably so that I don't fall and break my hip. The dentist is for avoiding osteonecrosis of the jaw. #7 mentions Kaiser because I will have to switch insurance soon. More on that later.

Ring the Bell

Today was my last day of radiation therapy. There is a tradition of ringing a bell to celebrate the end of treatment. But a survey found that those who rang the bell had more distressful memories of their treatment than those who did not.

I didn't plan to ring the bell but wanted to see if the bell sounds good. I took the clapper and tapped it very lightly against the bell, expecting a soft metallic sound. But it rang so loudly! I tried to stop the ringing, but it turns out it's true that you can't unring a bell.

Radiation Boost

I'm into the sixth week of my radiation therapy. The final week is a radiation boost targeting the area where my tumor used to be. First they do imaging (one x-ray), then they aim the machine at my breast from two different directions for about 10 seconds each. Just like before, I have to take a deep breath and hold it for those 10 seconds.

This is what my skin looks like under my arm area.

I have grade 2 radiation dermatitis. That's a fancy term for radiation burn. Grading descriptions:

Grade 1 – Faint erythema or desquamation.
Grade 2 – Moderate to brisk erythema or patchy, moist desquamation confined to skin folds and creases. Moderate swelling.
Grade 3 – Confluent, moist desquamation greater than 1.5 cm diameter, which is not confined to the skin folds. Pitting edema (severe swelling).
Grade 4 – Skin necrosis or ulceration of full-thickness dermis (middle layer of skin).

The photo doesn't show the reddest areas. My chest was very red but is starting to fade now. The bottom part of my breast is very dark (hyperpigmentation). I could be back to grade 1 now. My skin is still peeling and itches occasionally but there is very little soreness. I couldn't sleep on my left side because it was painful. I haven't checked lately if it still hurts.

Today was treatment #29 out of 30. One more day left.

Balance Problems

Lately I've noticed some unexpected stumbling. When I tried checking my balance by standing on one foot and walking heel to toe, I was a bit unsteady. When I tried it with my eyes closed, I couldn't do it at all. I don't know if this balance issue is caused by my cancer treatments. It could simply be due to aging.

I had my physical therapy appointment yesterday and received exercises for both balance and osteoporosis. I've decided not to work on my frozen shoulder anymore. I still can't raise my arm from the side, and there's been no improvement at all since last year. Maybe my shoulder will spontaneously go back to normal by itself in another year or two.

Two Days Off

Yesterday I mentioned to one of the radiation therapists that the area under my arm has started hurting. She said the skin looks fine but asked if I wanted to see a nurse after my treatment. I said yes. 

I waited a while for the nurse and was surprised that it was Dr. Horst who came. She reassured me that my skin looks good but offered to let me take the next two days off from treatment. I accepted. It doesn't hurt that much, but I'm afraid the pain will get worse or I could end up with open sores. The area under my arm is also starting to look burnt. I can't sleep on my left side because then my breast starts hurting. I'm relieved to get a two-day break.

I got clarification about the darkening of the skin on my back. I thought radiation was going through my heart and lungs to reach my back, but I noticed later that it's only the upper part of my back above where my heart is that's getting dark. Dr. Horst said the lymph nodes above my breast are being radiated, and because I have a smaller body, the beam is going all the way to my back. It doesn't go through my heart and lungs.

Crosshairs

There are three crosshairs drawn on my chest with a Sharpie for alignment with the linear accelerator when I get my radiation treatment. The radiation techs place a clear sticker over the marks to protect them. But every week, usually on the weekend, at least one of the stickers falls off. It loses its stickiness from the water when I shower and the steroid cream and moisturizer I apply three times a day.

To redraw the the crosshair, the techs have to do an x-ray. I was concerned that I'm getting unnecessary x-rays every week. But I was told they have to do these x-rays anyway even if the sticker doesn't fall off. It's so that they can check that the crosshairs are still correct or something. Anyway, I'm no longer worried about the stickers coming off.

My irradiated skin has been red since Friday. Usually the redness goes away within hours of my treatment, but not anymore. The radiation oncologist and radiation techs said my skin looks good despite the redness. I get occasional itching and soreness and have to be more diligent about applying steroid cream and moisturizer.

Today's treatment was the end of the fourth week. Two more weeks to go. I hope my skin doesn't get worse.

Radiation Affecting My Back

Saw my radiation oncologist today before my treatment. I mentioned to her that my back was turning dark. I wanted reassurance that it's normal. I've been moisturizing not just my front but also my back because I had heard that radiation affects the back also. Scary to think that radiation goes through my chest, then my heart and my lungs to burn the other side.

My sister Kit asked why they don't use a lead apron to protect the rest of my body from radiation. At my dentist they always use a lead apron before doing x-rays. It's because the radiation treatment is more targeted compared to the x-rays done at the dentist. It's actually recommended now not to use a lead apron because it might cause more harm.

Kit also said that topical steroids like the ones I'm using can cause thinning of the skin. I didn't know that. Mometasone furoate and triamcinolone are both class III potent steroids. This article said not to use it for more than three months. I plan to use it for two months (6 weeks radiation plus 2 weeks post-treatment for delayed reactions) and should be good.

Six Weeks Radiation

Yesterday I was reviewing my radiation appointments. My last appointment is on July 27. That makes 6 weeks total. I thought I was having only 5 weeks of treatment, so I sent a message to my doctor's team asking for clarification. Looks like I misunderstood. I get 5 weeks of treatment to the left breast and axilla area. Then I get another week of treatment to the lumpectomy area only. So it's 6 weeks total. 🙁

Here's the doctor's note from an earlier visit:

With respect to radiation, we recommend treating L breast and axilla to a total dose of 50 Gy in 25 fractions over the course of 5 weeks using a 3D conformal radiotherapy technique. A boost of 10 Gy in 5 fractions to the lumpectomy bed will follow due to residual disease after chemotherapy, patient age, and perineural involvement pathologically.  

I thought the boost would be on the fifth week. The good news is I was able to get more of the mometasone steroid cream and can go back to applying it twice a day. My doctor doesn't expect me to get any significant skin changes other than darkened skin, but I feel better using the cream in addition to frequent moisturizing. I don't want radiation burns.

Yesterday's session was #14 out of 30.

Too Many Appointments

I've been having this many appointments every week:

5 daily radiation treatments
1 radiation oncologist visit
1 physical therapy
2 acupuncture treatments

That's 9 total. On my way to PT yesterday, I was thinking I'm tired of all these appointments. My physical therapist must have read my mind because she suggested coming every 2-3 weeks instead of every week. I readily agreed. She said what I need is time for my shoulder to get better. My next appointment is three weeks away.

I'm not convinced that acupuncture is helping that much, so I cancelled today's appointment and don't plan on returning.

I get Monday off for the 4th of July weekend. That leaves me 5 radiation appointments next week -- 4 treatments plus 1 doctor visit. But Friday is my next infusion. Three appointments for it -- blood draw, visit with oncology nurse, and infusion. I also get radiation in between, so that's 4 appointments on Friday and 8 total for the week.

Radiation Therapy Skin Care

Radiation therapy has many side effects, among them skin changes, fatigue and pneumonitis. The skin changes include redness, itching, burning, soreness, peeling, blisters, or darkening of the skin. I'd like to avoid all of them. Besides using moisturizers 3x a day, it's recommended that you wear loose clothing, use fragrance-free soap, and avoid scrubbing in the shower. Even a washcloth is not gentle enough.

I found an article that lists moisturizers/creams used by a group of patients (Table 8). The most commonly used ones are mometasone, Aquaphor, and Eucerin. I have all three and more.

Clinical studies showed that the prescription steroid cream mometasone furoate works well on radiation dermatitis, so I asked for a prescription. I've been applying the cream twice a day but found out I can refill my prescription only once a month. I received three of the little tubes in the photo. At 2x a day, a tube lasts less than a week. I'm going to have to cut back to once a day to make the cream last longer.

I saw my radiation oncologist today, Dr. Horst (switched over from Dr. Salem who had gone on medical leave), and she said I can also use triamcinolone, another prescription steroid cream. I happened to have a big jar of it from when I had a rash on my arm. I haven't seen clinical studies showing the effectiveness of triamcinolone on radiation dermatitis, so I hope it does work as well as mometasone.

At Stanford I apply mometasone and Eucerin immediately after my radiation session. I've noticed that my chest is slightly red after these sessions. I use a spatula to help apply cream and lotion to my back, which can also experience skin changes.

I'm going to change up my routine. Before bed, I will apply more steroid cream (switching to triamcinolone) and moisturizer (coconut oil with lavender essential oil). In the morning I'll apply calendula cream and moisturizer (either coconut oil or Eucerin). After a shower, I'll use triamcinolone and Eucerin. I'll hold off on using Aquaphor unless my skin gets really dry or worse.

They say it will take at least two weeks before I see skin changes, but I already see redness and darkening of my skin. When my radiation therapy ends, I could see worsening side effects for another two weeks and will have to continue my skin care routine.

Today was session #8. Seventeen more to go.

Acupuncture

I started acupuncture last week for my frozen shoulder and have had two sessions so far. The doctor starts out by manipulating my shoulder and elbow joints. He does it very slowly and gently. Sometimes he does it with his eyes closed, as if he's meditating. I keep thinking he's falling asleep.

Next step is inserting the needles. He doesn't want to put them in my shoulder because it's the same side as my surgery. Instead he uses my left leg, just three needles in my lower leg. It doesn't hurt when he inserts them. Then he leaves me for a while after instructing me to do some stretches.

The only difference I've seen so far is that my arm can reach a little higher. I don't know if it's due to acupuncture or the physical therapy I continue to do once a week. I still can't raise my arm sideways beyond shoulder level.

Slower Infusion

I had three appointments today -- radiation session #4, a blood draw, and T-DM1 infusion #3. I arrived at 1pm and didn't leave till 7pm.

After my first T-DM1 infusion six weeks ago, I had three instances of neuropathy. After my second infusion, I had over 50 instances. Almost all of them were very brief, lasting only a second or two, and mostly on my hands and feet. While tolerable, I'd prefer not to have any pain at all, especially since the neuropathy can become permanent.

A person in my support group suggested slowing down the infusion to 90 minutes and also receiving normal saline for the duration. That makes sense. My first infusion was 90 minutes long so that the nurse can observe me for reactions to the new drug, and I had very few neuropathy episodes. The second infusion, however, was much faster at only 30 minutes. 

So a few days ago I sent a message to my doctor's staff asking that the infusion be slowed down. That means they had to extend my infusion appointment from 2 hours to 4 hours. It took 3.5 hours today, partly because they were 20 minutes late getting started. They always give me Zofran before the infusion. 

All those fluids meant I had to use the bathroom several times. It's no fun having to get out of bed, put on my shoes, unplug the IV pump, and carefully roll it with me to the restroom.

My blood work showed that my potassium was low again. I don't know why it was low. I had to take two big potassium pills. I managed not to gag or get the pills stuck in my throat.

Radiation Therapy #1

Today was the first of my 25 radiotherapy sessions. I was scheduled for 45 minutes, but I think it took only 30 minutes. They had created a mold from the planning session I had last week. The mold holds my body in exactly the same position for each of my sessions. For this first session, the first step was to do x-rays, then they did the radiation.

My tumor was on the left side, so the radiation was aimed at that side. But my heart and lung are also there. While receiving radiation, I had to take a deep breath and hold it for about 20-30 seconds. I did this maybe 3-4 times. The machine, which is a linear accelerator, was repositioned each time -- right side, above, and left side.

The radiation oncology nurse told me afterward that out of the 40 Gy dose I received, about 5 Gy are absorbed by my heart and lung despite the breath hold technique. I don't know what kind of damage that will do to my heart, but I could get pneumonitis in my lung, treatable with steroids.

The nurse also said that I might feel pinching in my breast due to the radiation. It's actually nerve pain. I felt some in the first hour and again a couple of hours later. Great. As if I don't get enough nerve pain from T-DM1.

Bone Density Test

When I finish my radiation therapy, my oncologist will start me on aromatase inhibitor pills. One of its side effects is bone loss. She ordered a bone density test to establish a baseline. I had the test done today and already have the result. 

I have osteoporosis. 😲😲😲

Radiotherapy Planning Session

I had a radiotherapy planning session yesterday. They had me lie on my back and position my arms above my head. I was lying on a sheet, and they pulled the sheet this way and that way to get me into the right position and used pads to hold me in place. I have to be in the exact same position for each of my radiation therapy sessions.

My left shoulder started hurting just a couple of minutes into this. They repositioned my hand on my head and added more pads to support my arm. I couldn't move my elbow low enough because my shoulder is still partially frozen. I hope my arm doesn't get radiated.

They used a marker to draw three marks on my chest -- left, center and right. The marks are used to align the machine when I get my treatment. The marks were covered with clear bandage to keep them from wearing off. In the past they used to tattoo patients. I'm glad they've stopped doing this.

The last step was to get a CT scan. It took only a few minutes.

My radiotherapy is scheduled to begin next Tuesday. The therapy is Monday to Friday for five weeks. Because of my shoulder problem, I wanted to postpone my therapy for another week. But Stanford will require me to get another covid test, so I said forget it.

T-DM1 Session #2

I saw an oncologist appointment two Fridays ago followed by my second T-DM1 infusion. The only remarkable thing about the infusion is that when I arrived for my appointment, I was told it was in Redwood City, not Palo Alto. All my previous infusions had been in Palo Alto. I didn't even know they had an infusion center in Redwood City. Anyway, I was an hour late for my appointment.

I told my doctor I got intermittent but very brief nerve pain in my right hand and right foot after my first infusion. The day after my second infusion, I suddenly had intense pain in my right middle finger. It felt like an electric shock. Several seconds later it felt like I got stabbed with a large needle in the same finger. It happened a second time and made me flinch. I've had several other episodes that were a lot less painful, most of them lasting only a second or two.

I've been applying cold packs to my hands and feet during my infusions to help prevent peripheral neuropathy from T-DM1. Looks like I have to be make sure all my fingers and toes get very cold.

Ophthalmologist

I saw an ophthalmologist today. After my chemo ended three months ago, I started getting lots of styes. It got better after a while, but now it's not improving at all. I was hoping I could get something to get rid of the styes, but there's nothing that will work. The doctor said the styes will go away in 6 to 9 months. 😕

It doesn't look too obvious in the photo, but there are several styes in my eye. I keep accidentally poking the large one. There are not as many styes in the other eye, and they're a lot smaller. Incidentally, my eyebrows have filled out, but my eyelashes are still fairly short.

Another reason for visiting an ophthalmologist was to confirm that my tear ducts are not blocked due to my chemo treatment. To test it, the doctor picked up a syringe with a needle. The needle had a blunt tip, but as it got closer and closer to my eye, I was 😧. He didn't explain what he was about to do, and I was afraid to ask. I believe he inserted the needle into the punctum (the hole in the corner of the eyelid where tears drain out) and flushed it with saline. I let him know when I felt the saline in the back of my throat. He pulled out the needle, then he did the other eye. It didn't hurt, but it was a bit scary.

Anyway, it's good to know that my tear ducts are not blocked. A patient in my support group had this problem, and she had to have stents inserted in her puncta under general anesthesia.

Ultrasound Follow-up

Back in November, Stanford found a tumor in my other breast. It turned out to be a second fibroadenoma that I've had since at least 2013 and that PAMF missed, thinking it was part of the first fibroadenoma. Stanford recommended a follow-up ultrasound in six months, and that's what I had today. Radiologist says there's no change in the tumor, and I can resume regular screening.

Shoulder Therapy

I had a physical therapy session this morning for my shoulder. It had been three weeks since my previous session. I was on the waiting list the last two weeks but never got called. Apparently the staff is extremely busy and doesn't have time to call people on the waiting list when there's a cancellation. 

Raising my arm forward is much better although not quite at pre-surgery level. But when raising my arm sideways, I can't go past shoulder level. The therapist Laurie says the cording in my underarm is gone (AWS or axillary web syndrome complication due to surgery). But the limited sideways movement is due to my frozen shoulder. Even before surgery I could not raise my arm sideways above shoulder level.

Laurie massaged and did some intense stretching of my shoulder. Ow ow ow. She sent me home with five exercises to do, some of which I had done before for my shoulder before surgery. I have confirmed appointments the next three weeks. No waiting list this time.

In the afternoon I went to CVS to get my second shingles shot. The first one was back in November. I held off on getting the second dose while I was on chemo. The shot was quite painful. I iced my arm when I got home and also took ibuprofen. I hope I don't experience other side effects tomorrow.

Dentist

Had my 6-month cleaning and check-up today. My dentist recommended coming back in three months because chemo can thicken saliva and cause cavities. She said to sip water frequently to moisten my mouth, something I already do. She also prescribed a toothpaste with prescription-strength fluoride to prevent cavities.

I have an appointment every day this week: dentist, physical therapy, ultrasound, opthalmologist, oncologist, and infusion.

Fever

Last night I was feeling feverish, so I checked my temperature -- 99.6. Just a slight fever, but I wasn't feeling well, had body aches, felt tired and sleepy, and had the slight diarrhea. I went to bed early and was fine this morning. Well, except for the occasional slight diarrhea.  I think I will continue to have it till my infusions are done in February.

This was the first time I used my thermometer since I started cancer treatment. Even though it's milder than regular chemo, T-DM1 still has many side effects. These are the most common:

• tiredness/fatigue
• nausea
• bone and joint pain
• muscle pain
• low blood platelet count
• headache
• constipation or diarrhea
• nerve damage
• low red blood cell count
• low potassium levels

I'll have to remember to mention my symptoms to my doctor at my next appointment.

In other news, I've been doing my physical therapy exercises and am seeing some improvement. I got a call today from radiology about scheduling a planning session, but I have to be able to raise my arm above my head, and I'm still a long ways away from that.

My hair continues to grow and is about half an inch long. My eyebrows and eyelashes are filling out. But I continue to get many styes. I also have some swelling called chalazion. At least it's stopped hurting.

T-DM1

I saw my oncologist, Dr. Caswell-Jin, on Friday. She had presented my case to the tumor board. They agreed that even though there are still 1% cancer cells in my breast tissue, I otherwise had good response to the chemo and don't need additional cycles. Instead she switched me from Herceptin and Perjeta to T-DM1.

T-DM1 (brand name Kadcyla) is a combination of Herceptin (trastuzumab) and a chemo drug. Side effects should be milder than from regular chemo. I will receive T-DM1 every three weeks for 14 cycles. My last infusion will be on February 4, two month longer than if I had stayed on Herceptin and Perjeta.

I had my first infusion Friday and was given 16 mg of Zofran for nausea. A woman in my support group got bad neuropathy from T-DM1. So I brought ice packs with me to use on my hands and feet to ward off neuropathy. I've experienced no other side effects so far.

Axillary Web Syndrome

I had an appointment this afternoon at PAMF with the physical therapist who worked on my frozen shoulder, Laurie Pepin. Looks like I have axillary web syndrome. I definitely see cording under my arm. It feels so tight when I try to raise my arm. I can't raise it above shoulder level. It's also painful, although the pain has eased up recently.

Laurie did therapeutic massage under my arm. She showed me two exercises and a massage I can do at home. I have appointments to see her weekly for the next few weeks, although I'm on the waiting list for the next two weeks. But because Laurie works exclusively with cancer patients who sometimes don't feel well enough for their appointment, she gets one cancellation per day, and I expect I'll be able to get off the waiting list. 

Also this afternoon I had an appointment at Stanford for an echocardiogram. It was a limited test and took only 10 minutes. The test usually takes 30+ minutes. This is my third echocardiogram. I get one every three months because the drugs I'm on can damage my heart.

Radiation Oncology Appointment

Had a video call today with my radiation oncologist, Dr. Salem, and her staff. Because I had a positive lymph node when first diagnosed, I will receive five weeks of daily radiation. If my shoulder is doing well, I could start radiation in two weeks.

I don't know if my shoulder is frozen again. The incision under my arm hurts when I raise my arm. I'm getting a referral for physical therapy just in case. If I can't raise my arm, radiation will have to be delayed.

A major concern for me is radiation burns. I was told that with my skin color, my skin may just turn dark and not burn. I don't remember Ma getting burns from radiation, and her skin was lighter than mine.

But to make sure, I will apply unscented moisturizer 3x a day as recommended. In this article, the ones used most often are Aquaphor, Eucerin and Mometasone. I have a jar of Aquaphor but don't like it. It feels like petroleum jelly. I'll try Eucerin. Mometasone is a steroid cream. Some studies show it works better than moisturizers. I've asked if I can have a prescription. A few women in my support group recommended Miaderm, but it's too expensive and may not work any better than other moisturizers.

Surgical Follow-Up

Saw my surgeon this morning. The surgical resident who assisted her was also there. My incisions are healing well. But there was fluid in my breast that had to be aspirated. I asked, "Aspirated? Does that mean needle?" She replied, "Don't look."

I didn't feel the needle go in because part of my breast is numb. Don't know if the numbness is temporary. There was a tiny bit of pain as the fluid was drawn out. After the fluid was drained, the lower half of my breast collapsed like a balloon. That's going to be the permanent shape of my breast. But I think my breast has filled with fluid again already because it's back to its post-surgical shape. My body will eventually absorb the fluid, then I'll have a partially collapsed breast again because so much breast tissue had to be removed.

One thing I learned at my appointment is that even though cancer cells were found in the excised breast tissue, it's in only 1% of the area. Because it's almost zero, it's possible my oncologist will not change my drug treatment. I have an appointment with her on May 7.

Pathology Result

They found residual cancer cells in my lumpectomy tissue. 😕 I'm disappointed. I was hoping for pCR (pathologic complete response, meaning no cancer cells left) even though I knew the odds were low. At least all six lymph nodes were negative for cancer. 

If I understood the report correctly, I don't need additional surgery. I have a follow-up appointment with my surgeon on Monday. I see my radiologist on Wednesday. She will probably recommend five weeks of radiation. 

I see my oncologist on May 7. She will probably discontinue Herceptin and Perjeta and will put me on T-DM1 (Kadcyla) which is a combination of Herceptin and a chemo drug called emtansine. I hope the side effects are not as bad as regular chemo. One woman in my support group was getting very bad peripheral neuropathy from T-DM1 and had to switch back to Herceptin and Perjeta.

Post-Op

I haven't had much pain, much to my surprise. I've been taking Tylenol in the morning and before bed anyway, just to bring the pain level down to zero.

Yesterday I removed the clear film (Tegaderm?) over my incisions. The steri strips are still there. The incision under my arm has started hurting a bit more after the film was removed. The incisions are longer than I expected, maybe two inches. I don't like looking at them.

One thing I have to do is wear a supportive bra 24 hours a day for the first 7 days. I believe the idea is to keep my breast from moving. They put a breast binder on me at the hospital. I've been switching between that and sports bras I bought for the surgery. Neither one is particularly comfortable.

The MyHealth app that Stanford uses has been updated with the surgeon's notes. In the description it says that five sentinel lymph nodes were removed. But the list at the end of the notes says six were taken out. The surgeon's note says I had a sentinel lymph node biopsy. But the resident doctor who assisted her lists both sentinel lymph node biopsy and axillary lymph node dissection. I assume I got a biopsy. Six nodes is higher than average for a biopsy, but it's also lower than average for a dissection.

Another confusing item is that it says I'm ER negative. I thought I was ER positive. I've sent a message to my surgeon's office for clarification.

If I read the note correctly, it says that the lumpectomy left a rather large hole in my breast and they had to move some breast tissue around to fill the cavity. To be clear, there was no tumor in my breast. Chemo got rid of it. But there were calcifications left behind that may or may not turn into cancer, and there may be microscopic cancer cells lurking in my breast that tests are not sensitive enough to detect. The lumpectomy was to remove most of the calcifications and the area where the tumor used to be.

A 2 x 2 cm device called a BioZorb was placed in my breast. It's supposed to help in targeting radiation later. I don't know if it also helps with the breast shape, but it gets absorbed within two years. I'll have to ask my surgeon if my breast shape will change over the years as the BioZorb shrinks.

Surgery

Had my dreaded surgery yesterday. Got up at 3:30 am to apply EMLA cream to my port. Was able to go back to sleep for 35 minutes before getting up again. Friend Sindhu picked me up at 5:00 am. Arrived at 5:30. Surgery was at the Cancer Center building which has an Ambulatory Surgery Center, not at the main hospital building.

They were able to use my port instead of my arm for an IV. 3:30 am is not an ideal time to apply EMLA cream. I must have applied it in the wrong location because the needle was very painful when it was inserted. They may have also used a larger needle. 

I was given Emend tablets for nausea and a Tylenol tablet pre-op.

The anesthesiologist stopped by and understood that I wanted no pain and no nausea. She said she would use a simple airway on me after she learned I have issues with acid reflux. I told her I wanted to count down from 10 before losing consciousness, but my last memory was being wheeled into OR and seeing an awful lot of people.

I don't know if it started on time, but my surgery was scheduled for 7:15 am. My first conscious memory post-op was at 10:40 am. I don't know what time surgery ended, but the surgeon estimated it would last 1.5 hours. 

I was so drowsy and kept falling asleep and also had nausea. It wasn't till 2:40 that I was alert enough to go home. I had to pee first, and discovered I have blue pee. The surgeon injected me with a blue dye to help locate my sentinel nodes. I still had nausea, but the nurse said I had already been given two doses of anti-nausea meds. They did send me home with a barf bag, crackers, ginger ale, and an alcohol swab to inhale.

Cousin Nancy gave me a ride home. We arrived at 3:45 pm. My friends George and Diane from Pismo Beach had arrived and were waiting for me at home. They're staying with me till Sunday. I spent the rest of the day with nausea and vomiting. I took one Tylenol capsule for pain and promptly threw it up. So I had no painkillers last night, but it wasn't too bad.

I took it easy this morning. Went downstairs for lunch. We went for a drive in the afternoon and bought some groceries at Trader Joe's. George made tacos for dinner. It was excellent. He used taco seasoning from Trader Joe's. I'll have to buy some later.

Not much pain today. I took one Tylenol this morning and took another tonight just in case. I'm wearing the same breast binder they put on me yesterday. My instructions say to wear a sports bra 24 hours a day for 7 days.

The only thing I know about my surgery was that 6 sentinel nodes were taken out. I thought there would be only 2 or 3. I didn't ask about the lumpectomy. I have two incisions, one on the lower right of the breast and another under my arm. I won't know the pathology results till my follow-up appointment on April 26.

Pre-op Procedures

The day did not start well. I woke up to news that my aunt wasn't doing well, and she died soon after. She was my mom's last remaining sibling. RIP Tita Med.

I had two pre-op procedures today. They're usually done the day of surgery, but because I'll be the first surgery of the day, the procedures were scheduled early to save time in the morning. Despite that, I still have to show up at 5:30 am tomorrow for surgery at 7:15.

The first procedure was to place a Savi Scout reflector in my breast. It's supposed to allow better accuracy in locating the tumor during surgery. In my case, because the tumor is gone, it's used to pinpoint the calcification that's left behind. The surgeon will then use a radar device to detect the reflector.

What I didn't know till I arrived for the procedure was that two reflectors would be placed to mark the edges of the calcification. There were two radiologists for the procedure. I think one doctor was training the other. 

A mammography machine was used for imaging. First my breast was compressed between two paddles. While it wasn't as bad as getting a mammogram, it was occasionally painful. I had warned the doctor before that my earlier breast biopsy was extremely painful. So I was given two shots of lidocaine. The first reflector was inserted, but the needle was left in my breast in case the reflector position needs adjustment. It hurt when the needle went deep, so I was given a third shot of lidocaine. Then the second reflector was inserted. Again it hurt, and I got a fourth shot of lidocaine.

Several images were taken while the two needles were sticking out of my breast. The position of one reflector had to be adjusted several times. Then the needles were finally removed. The whole procedure took about 35 minutes with my breast compressed the whole time. Brutal.

Next procedure was an injection of radioactive tracer to locate my sentinel lymph nodes during surgery. I was told the injection would feel like a bee sting, as if it's nothing. I've only been stung once in my life, and it was extremely painful and felt like an electric shock. Thank goodness for the four shots of lidocaine in my earlier appointment. I still felt the injection, but it wasn't as painful as it could have been.

The procedure took 20 minutes. I then had to kill time for 1 hour 40 minutes to allow the tracer to work its way to my lymph nodes. I was told to go for a walk to help the tracer. When I returned later for my imaging appointment, a gamma camera was used to detect the tracer. It didn't take long, maybe 15 minutes.

My breast started to feel sore on my drive home. Tylenol helped.

Second Covid Shot; Update on Side Effects

I got my second covid shot yesterday. The only side effect I've experienced so far is a sore arm. I forgot to bring my vaccination card, but it was no biggie. They gave me a new card and marked it for the second shot. Now I can get a free donut from Krispy Kreme. 🍩

This morning I got my every three weeks infusion. The pharmacy got my drugs ready early, and my infusion ended an hour earlier than usual. It took just a little over two hours.

Next stop was a covid test. It's required before I can have surgery. The test is so unpleasant. They insert the swab very deep into your nose. Even though the test is not painful, it's so awful that I'd rather get an injection. When I drove away from the drive-thru site, I pulled over for a while and cried. I think I got overwhelmed by everything that's going on. This was the first time I cried over my illness. It's been six months since I discovered my tumor. Not bad.

My last chemo session was on Feb. 22. My eyelashes and eyebrows started falling out after that. I didn't lose them all, and more fell out of one side than the other. I lost all the eyelashes on the right and a lot of the right eyebrow. But now new eyelashes are already growing out, and my eyebrows are starting to fill in. 

My hair is also starting to grow out. It's still quite short, less than 1/8", but it's long enough to make my scalp look dark.

Other improvements: 

• My skin is not so dry anymore. I'm not shedding skin all over the place like I used to.
• I've gained weight. My appetite is back, food tastes good again, and I'm eating way more than I should. This morning I weighed 105 at my appointment.
• My fatigue went away about 10 days after my last chemo. It disappeared as quickly as it appeared. I thought it would go away gradually, but no.
• I've had a runny nose since my first chemo. I've gone through several boxes of tissues. Sometimes I'd be blowing my nose nonstop for several minutes. My nose was bloody too. It finally stopped a month after my chemo ended.

What hasn't gone away is the off-and-on diarrhea. It's a side effect of Perjeta. I'm afraid I'll be experiencing diarrhea till December. My potassium was low again this morning. I was given 40 mEq of potassium. It was in powder form this time, orange flavor and very salty. I was given apple juice to mix it with. I'm glad they didn't give me the humongous tablets that I had trouble swallowing.

Tomorrow I have two pre-op procedures scheduled. Surgery is on Wednesday. I was stressing out over the procedures and surgery. Now that I've got my questions answered, I'm feeling more calm. I just wish it hadn't taken such a long time to get them answered.

Surgery Rescheduled

I had a video call Monday with an anesthesiology nurse. I made it clear to her that I don't want pain, and I don't want nausea. When I asked her about getting a nerve block, she said they don't do it at the South Bay location where I was scheduled to have surgery. It's a smaller cancer center in San Jose.

A few hours later I had an office visit with my surgeon and asked about getting a nerve block. She thinks it's not necessary. This may be true for some patients, but I know it's offered as an option at other hospitals for the same procedures I'm getting. Regardless, it's not offered at the South Bay center.

My surgeon wanted me to have a wire-guided localization to mark the breast area to be excised. But her nurse mentioned a newer technology called Savi Scout. From what I've read, it may or may not be more accurate, and it may or may not improve the odds of getting clear margins. It does have the advantage of not getting accidentally dislodged. It also eliminates having an uncomfortable wire sticking out of the breast for possibly hours before surgery begins. I asked my surgeon if I could switch to Savi Scout, and she agreed.

Then I asked about Lumicell. It's an imaging system that highlights tumor margins. Like Savi Scout, it improves the chance of getting clear margins. If I don't get clear margins, I will need a second surgery, and I absolutely do not want to undergo surgery again. 

It's not clear to me if I'm a candidate for Lumicell. But the surgeon said I can't have it because it's done only at the Palo Alto location. At this point she stated that because I wanted the surgery on April 6, it limits me to the South Bay location. I told her that wasn't true, that I didn't request April 6. She abruptly left, presumable to find the coordinator and reschedule my surgery. I later found out from her nurse that she prefers the Palo Alto location because it's a bigger facility with more resources.

My new surgery is date is April 14. This works out better for me because I have my second covid shot scheduled for April 11 and my next infusion for April 12. On April 13 I'll have two pre-op procedures, the Savi Scout and radioactive tracer. I will also need another very unpleasant covid test.

Another plus is that the new date gives me more time to visit with my sister and nephew who are in town to visit my dad. They won't be out of quarantine till Friday and will fly back on April 10. With my original surgery date, I would have had only three days to see them.

Surgery Second Opinion

I had a video call on Wednesday with Dr. Wong at UCSF. She recommended lumpectomy and sentinel lymph node biopsy followed by radiation. No surprises there. I was already resigned to having surgery and let Stanford know. My surgery is scheduled for April 6. 

Monday was my sixth infusion of Herceptin and Perjeta. I will get 18 infusions total.

Radiologist + Vaccine

Had a video call Wednesday with a radiologist, Dr. Salem. Most of the time was spent with the resident radiologist, Dr. Wang. The recommendation will likely be 3-5 weeks of daily radiation depending on the pathology after surgery. I will have another appointment two weeks after surgery.

I became eligible for the covid vaccine on Monday. Because of the vaccine shortage, I could not find appointments Monday and Tuesday. On Wednesday I tried looking in San Francisco and managed to get an appointment today at Moscone.

My friend Dhez joined me on the drive to SF. I didn't mind the company because driving in SF, especially downtown, stresses me out. Parking in the garage was also stressful because the parking spaces were so narrow. I drove past several available spaces till I could find one that was a bit roomier next to a partial wall.

There were hundreds of people at Moscone, but they were pretty good about keeping their distance, and the process went smoothly. The vaccine was from Pfizer. I had to sit down for 15 minutes after my shot in case of adverse reactions. From the time I entered till the time I left the building was 35 minutes.

Dhez and I ordered lunch to go and ate it at a nearby park. It was a nice and sunny day. There were lots of people out and about in SF. Too many, in fact, considering there's a pandemic. Most folks wore masks, but not all.

My arm is sore. My second shot is due in three weeks, on April 11.

Muscle Pain

The fatigue caused by my chemo is pretty much gone. I can walk up the stairs without trouble. But I noticed pain in my thighs and also in my arms. It was puzzling since I haven't been working out. I finally looked it up. Muscle pain can be a side effect of Perjeta. Either that or I have covid.

The pain is not too bad. It hurts only when I move. I try not to move.

I saw the surgeon again last Monday. She's recommending a lumpectomy. She will also have to do a sentinel lymph node biopsy. That means I will have two incisions. 

If I don't have clear margins, meaning if pathology finds cancer cells around the rim of the tissue that's removed during surgery, I will need a second surgery, and it might have to be a mastectomy. I don't want a second surgery. I don't even want a first surgery.

I managed to get an appointment at UCSF on March 24 for a second opinion. The doctor I wanted to see is not available till late April, so I settled for another doctor who trained under her.

Tumor Gone

I had an MRI, mammogram and ultrasound this week. The tests show that the tumor is gone. There is calcification and/or possibly DCIS (pre-cancer) where the tumor used to be. 

My oncologist thinks I should have surgery. There could be cancer cells remaining that the tests are not sensitive enough to catch. We didn't even discuss radiation, which like surgery, I'm hoping to avoid.

I see my breast surgeon again on Monday. She will probably recommend at least a lumpectomy followed by radiation. Both the surgery and radiation are supposed to get rid of the microscopic cancer cells, but it's not 100% guaranteed.

This afternoon I called UCSF to get a second opinion from a breast surgeon who is studying whether women are being overtreated. It will take them a couple of days to review my case, then they'll call me to set an appointment. 

When I went for my MRI on Tuesday, I thought they'd be able to use my port for the contrast dye, but they could not because I had to lie face down during the test. The nurse inserted a needle in my left arm but could not get past the valve in my vein. She tried my right arm. Same problem. Third time's the charm. She switched to a smaller butterfly needle and successfully started the IV using my hand. I thought it would really hurt but was no worse than using my arm.

Because I thought they would use my port, I applied EMLA cream to numb it up and covered it with a bandage called Tegaderm. When I removed the Tegaderm later, some of my skin came off with it. Ouch. It really stung for a couple of days. I had never had a problem with Tegaderm before. Maybe my skin came off because it has gotten so thin and dry, and I used Tegaderm two days in a row.  I'll have to remember to let the nurses know next time I go for an infusion. They also use Tegaderm on my port during my infusion, and there is another type of bandage they can use for those who are sensitive to Tegaderm.

Infusion Without Chemo

Monday I got Herceptin and Perjeta. It was the first time I got the two targeted therapy drugs by themselves without a chemo drug, so I'm just now learning what side effects they'll give me without chemo. Looks like Perjeta gives me diarrhea. I'm not looking forward to getting diarrhea every three weeks till December.

My potassium was still low on Monday, so my oncologist told me to take 40 mg of potassium pills twice a day until today when I got tested again. It's now back to normal. However, she said to take a dose every time diarrhea starts.

My WBC is also back to normal. I'll feel safer going to the farmers' market and Trader Joe's. I've been avoiding both places and all other stores.

I had been taking Prilosec for heartburn. The 14-day course ended on Monday. On Wednesday the heartburn came back. Doc said to keep taking Prilosec daily for three months. That's how long it typically takes the body to recover from the damage done to the stomach by chemo.

Visit with Surgeon

My surgeon, Dr. Wapnir, saw me Monday immediately after my chemo. Since I haven't had my follow-up tests yet, she didn't have a recommendation for me. But she did want me to consult with a reconstructive plastic surgeon. I have an appointment with him tomorrow.

Next week I have an MRI, mammo and ultrasound scheduled. I see my oncologist at the end of the week, then I see Dr. Wapnir again the following Monday.

I told Dr. Wapnir I didn't want surgery if at all possible. The idea of being cut up scares me. She thinks I'm being unreasonable. 

MD Anderson is conducting a study to see if women who achieved pCR (pathologic complete response) after chemo can avoid surgery. They will receive radiation without surgery instead. The goal is to see if patients are being overtreated. 

The Stanford study I'm participating in where my drugs were reduced from four to three and the duration from six to four treatments (although the number of treatments changed when I switched to Taxol) -- it has the same goal to see if women are being overtreated.

Chemo #8

Monday was my last chemo. Note that I still need to take Herceptin and Perjeta every three weeks till December. Those are classified as targeted drugs, not chemo drugs.

My potassium is still low, and they gave me potassium pills again. But instead of two giant pills, they gave me six slightly smaller pills that were easier to swallow. 

The nurse noticed rashes on my arms. I thought they were due to dry skin, but the nurse practitioner who stopped by didn't think so. I was prescribed a corticosteroid cream called triamcinolone acetonide to be applied twice a day.

Chemo #7

Had another chemo on Monday. I think I have to take Ativan for at two days whenever I get dexamethasone. I've noticed that it gives me insomnia for at least two nights, and Ativan helps me sleep.

Pepcid hasn't been working all that well for me. I switched to Prilosec yesterday, and it seems to be working better.

Next Monday will be my last chemo. I have an appointment with my surgeon the same day.

Not much else to report except I'm losing my eyelashes. 👁

Chemo #6

I had my 4th round of Taxol yesterday along with Herceptin and Perjeta. My appointment for blood draw was at 7:10 AM, which meant I had to get up at 5 AM to EMLA cream on my port to numb up the area.

Again I managed to get a private room for my infusion. My appointment started at 8:10. It didn't take long for the pharmacy to prepare my drugs this time. By 9:20 I was hooked up to Perjeta. That took 30 minutes, then another 30 minutes of observation. Herceptin also took 30 minutes. Taxol started at 11:00 and was done an hour later. 

Before being discharged, I had to take two potassium pills because my potassium level was below normal due to diarrhea. The potassium pills were huge! Horse pills! And I have trouble swallowing pills in the first place. The first pill took me only two attempts to swallow. The second pill took four attempts. By that time it had disintegrated, and I was able to add a bit of water to the cup that held it and swallow it. Thank goodness it didn't taste too bitter.

Taking Pepcid twice a day improved my appetite, and I managed to gain a pound since Friday. I was at 97 lbs. yesterday morning. My WBC is below normal. I'm definitely immunocompromised now. My RBC is also below normal, making me anemic. 

My friend Sindhu gave me a ride at 6:30 AM. Cousin Nancy gave me a ride home. Thanks, ladies!

Echocardiogram and Doctor's Visit

Last Friday I had to get another echocardiogram because my treatment can cause permanent heart damage. The tech would make me hold my breath occasionally, and sometimes she'd forget to tell me when I could breathe again. When the test was over, she told me I could hold my breath like a 22-year-old. 😛

I saw my oncologist afterward and complained of fatigue, loss of appetite, and heartburn. I thought she would prescribe something to stimulate my appetite, but she thinks the loss of appetite is due to the heartburn. I would get full after just a few bites, and it was also due to heartburn (bloating?). She told me to take Pepcid twice a day, and if that's not enough, take one in the morning and two in the evening. 

The fatigue is a side effect of chemo and is cumulative, meaning it will get worse with subsequent chemo rounds. Anemia is also making me weak.

I'm down to 96 lbs. I was 114 lbs. before I discovered my tumor.

Chemo #5

Chemo #5 was on Monday. My first appointment is always a blood draw. Two hours before the blood draw, I apply a thick layer of EMLA Cream (lidocaine 2.5% and prilocaine 2.5%) on my port and cover it up with plastic wrap and bandages. It numbs up the area so that I don't feel the Huber needle when it's inserted in my port. I learned in the past that applying the cream 1.5 hours before the blood draw didn't numb the area enough, so I always do it two hours early. The needle is left in my port after the blood draw so that it can be used for my chemo infusion.

About an hour later later, it's time for my infusion. A nursing assistant checks my height (it changes for some patients!) and weight (down to 98 lbs. 😮). Then they take me to an available infusion chair in an open area. The chairs are separated by curtains for privacy. But the Stanford infusion center has a certain number of private rooms available. I've been lucky so far in that I've always been able to get a private room. 

The nursing assistant checks my blood pressure, oxygen and temperature. At some point, an order is placed at the pharmacy for my chemo drug based on my latest height and weight. 

My nurse for the day then arrives and gives me premeds and starts a saline drip. The first two times I got Taxol, I was given three of the premeds intravenously (Pepcid, dexamethasone, Benadryl). Zofran was given to me in pill form. Starting with this third session of Taxol, only Pepcid was given thru the IV and the rest were in pill form. Dexamethasone should be taken with food, but I didn't want to break my fast. I took a chance that Pepcid will take care of any upset stomach, and it did.

The room usually feels cold, and I ask for two blankets. They're quite warm, as if they're fresh out of the dryer. Then I wait. The pharmacy must be very busy because it often takes two hours to get my chemo drugs ready. In the meantime the Benadryl makes me drowsy, and I manage a 20-minute nap.

A side effect of Taxol is peripheral neuropathy. To avoid that side effect, I apply cold packs to my feet and hands as soon as the Taxol infusion begins. You can see in the photo the blue cooler I brought with several cold packs. I also ask for a cup of ice that I chew on. It's supposed to help prevent mouth sores.

The Taxol infusion takes an hour. The Taxol and saline drip makes me pee several times. I have to drag the IV stand with me every time I go to the bathroom. 

When the Taxol is done, the nurse removes the Huber needle from my port and applies a bandage. My first appointment was at 10:20, and I didn't leave until 3:15. That's five hours for basically a one-hour infusion with a lot of waiting in between.

My cousin Nancy gave me a ride this time. I think I'll be okay driving myself for these infusions, but friends insist on giving me a ride, so thanks.

Chemo #4

My chemo yesterday was for Taxol only. Herceptin and Perjeta will continue every 3 weeks. 

My WBC last week was 9.7. Yesterday it was 6.3. I hope it doesn't go lower or I'd have to get a Neulasta shot again.

Because my chemo is now weekly, I fast for a shorter period. Instead of 4 days, I limit it to 2.5 days. On the day before chemo, I did consume something -- vegetable juice and some nuts. On chemo day, I did a water-only fast and continued for 24 hours after chemo infusion ended. Yesterday my infusion ended at 1pm, so I didn't eat anything till after 1pm today. I did get hungry yesterday but didn't eat. I didn't want to risk getting side effects by breaking my fast too early.

I do have a new side effect that started last week. My mouth is producing excessive saliva. It's not too bad but is an unusual side effect. I don't see it listed as a Taxol side effect at all. At least it's better than having a dry mouth.

Side Effects from Taxol

Because Taxol will be administered weekly, I'm getting a lower dose compared to Taxotere, and my doctor said I should experience milder side effects. I haven't had to take Zofran at home at all. No diarrhea. No fatigue. I felt a few tiny instances of nerve pain yesterday but didn't have to take gabapentin. While I haven't felt like I have heartburn, I'm avoiding foods that can trigger it.

That doesn't mean my other side effects have gone away. My skin is extremely dry. I keep seeing flakes of skin on my clothes. Food doesn't taste the same. It's not horrible but not great either. I've lost of a lot of muscle and am doing a poor job of eating more protein.

My next chemo is tomorrow. I started fasting again today.

Chemo #3

I had Chemo #3 today. I've switched from Taxotere to Taxol. One difference is that I don't have to take meds at home to prep for the chemo. But for Taxol, I was given premeds: 8 mg Zofran, 20 mg dexamethasone, Pepcid AC, and Benadryl. The Zofran was in pill form. The rest were IV and were given to prevent allergic reactions to Taxol. 

The Benadryl made me somewhat drowsy for a couple of hours but not terribly no. Nothing like how I feel when I take the non-drowsy formula of Dramamine. It makes me very drowsy, and all I want to do is sleep.

My WBC has gone down from 32 to 10. I'm surprised it dropped so much in just four days.

Nausea from Taxol is supposed to be milder. I may not get nausea at all. My doctor and chemo nurse both suggested waiting till I feel sick before taking Zofran at home. But I don't know if I'm brave enough to wait. I don't want to experience any nausea at all, not even mild.

Instead of fasting for four days when I had chemo every three weeks, I've modified my fast to 2.5 days, including 24 hours after chemo infusion ends. My modified fasting diet yesterday was supposed to consist of butternut squash soup only. But I cheated and had a few nuts and seeds and olives to help me feel full from the fat content.

Today I'm doing a water-only fast, although I hadn't planned on doing so. I was hungry earlier this afternoon but not tonight. I'll see if I can continue till 3pm tomorrow drinking water only.

Chemo #3 Postponed

I went to Stanford today for my third chemo session. Blood test showed that my WBC (white blood cell) count was 32. Way too high. Normal range is 4-11. Taxotere lowers my WBC, and I get a Neulasta shot to raise it back up. Dr. Caswell thinks I'm a hyper-reactive to Neulasta and recommended switching from Taxotere to Taxol so that I can skip the Neulasta.

Dr. C has recommended Taxol in the past. I refused because Taxol is given weekly and I would have to fast every week. But I said yes this time. I will modify my fast to two days instead of four, but I will have to limit my fasting diet to simple vegetarian soups and broths, no nuts.

There are advantages and disadvantages to switching to Taxol. First the disadvantages:

• Weekly infusions instead of every three weeks. That means six more chemo sessions instead of two.
• I have to fast more often and with a limited choice of food but for a shorter period.
• I will be given Benadryl to prevent allergic reactions, and it will probably make me drowsy. I hate feeling so drowsy. And I won't be able to drive myself to the chemo sessions.
• Because my last chemo session will be on approx. Feb. 22 instead of Feb 4, surgery will be delayed by at least 2.5 weeks, most likely in April instead of March.

Advantages:

• Fewer medications to take. While I'll be given dexamethasone at the infusion, I won't have to take it for three days at home. I can limit Zofran to once a day, which should minimize the accompanying constipation. I can also skip Ativan, Neulasta and Claritin.
• Milder side effects. Or so I'm told. 
• I had read in the past that Taxotere works better than Taxol. But the recent DAPHNE trial showed 55% pCR (pathologic complete response) using Taxol. 
• Taxotere can permanently block tear ducts and cause permanent hair loss. Taxol doesn't have these side effects.

I'm still waiting for my insurance to approve the switch to Taxol, but my next chemo is tentatively scheduled for Tuesday, Jan. 19.

Improved Shoulder

I've had several physical therapy sessions, and my shoulder is much improved. I can raise my arm forward almost overhead. Sideways motion is not as good but is improving.

The therapist manipulates my shoulder at these sessions. Today there was a lot of cracking noises. She said that was good. I was afraid she was breaking something. 

At the last two sessions, she also did cupping. I don't know if it helps, but it doesn't hurt except that I'm left with weird round bruises on my back from the cups.

My next chemo is tomorrow. I don't want to go. But I started fasting again yesterday.

New Side Effects

Overall the side effects from the last chemo haven't been as bad as the previous one, but I do have a couple of new side effects:

1. Taste buds -- Food tastes a little off. Not metallic but maybe slightly bitter. Even water tastes funny.
2. Appetite -- I know I'm not eating enough, especially protein, but it could be related to the taste change. The lack of protein could be why I dreamed twice about eating meat (and it was so good!).
3. Irritated eyes -- All day yesterday I had intermittent irritated eyes. It might be due to the chemo drug Taxotere leaking into my eyeballs. My ophthalmologist warned me about this. If it continues, I will make an appointment to see him again.

The side effects that showed up after my first chemo are ongoing:

1. Dry skin -- Not just on my face but throughout my body.
2. Dry mouth -- I use Biotene.
3. Diarrhea -- Not as bad.
4. Constipation -- Not as bad because I didn't take as much Zofran.
5. Heartburn -- Unpleasant but it hasn't caused vomiting.
6. Nerve pain -- Not as bad but I'm also taking two gabapentin capsules instead of just one.
7. Raw nostrils -- It got better for a couple of weeks but is back again.
8. Hair loss -- I think my eyelashes are starting to go.
9. Runny nose -- I've used up a few boxes of tissues.