Pain is Gone

I hope I don't jinx it by saying this, but most, if not all, of my pain is gone. A month ago, I would have said I'm in pain every day, but not anymore. I do still have some soreness and stiffness, but the sharp pains in my hips are gone. The pain was caused by the aromatase inhibitor I was taking.

I just tested it. The bed in the guest room is a bit too high for me, and climbing into it always hurt my hips. It didn't hurt at all this time.

A month ago, my pain peaked. Every movement of my legs and hips hurt to the point where I was in tears. Tylenol did not help. I happened to be chatting with Ate Rose at the time, and she recommended ibuprofen, but I didn't have any. I did have Aleve (naproxen) and took two tablets that night. It made a huge difference! There was still a bit of pain, so I bought some ibuprofen the next morning and took two tablets. I haven't taken any painkillers since then, and it seems that my pain gradually disappeared.

What could have caused the sharp pain to go away? Some things that I did recently:

1. I had physical therapy for my legs because I had difficulty getting up from a squat or even just lowering myself to the floor. It seems I'm always picking up stuff from the floor and also have to squat to squeegee my shower stall after a shower. The physical therapist said the exercises she gave me would help not just my thighs but also my hip pain.
2. I've since stopped the PT exercises and switched to doing free weights, especially for my upper legs.
3. Now that summer's here, I've been eating a lot more fruits, not just in terms of quantity but also variety. This includes a lot of fresh cherries, which have a good anti-inflammatory property.
4. I drank tart cherry juice but just one bottle over several days. Tart cherry juice is often recommended in the aromatase inhibitor forum I frequent.
5. For the entire month of June, I took Claritin daily. Claritin has an anti-inflammatory property.
6. As mentioned above, I took Aleve and ibuprofen but just two doses.

I don't how much the above actions helped. Most possibly helped (I have doubts about Claritin), but maybe something else caused my pain to ease up. I hope it doesn't return.

Osteoporosis or Osteopenia?

Last week I had a bone density scan at Kaiser. The previous one was two years ago at Stanford. Kaiser's diagnosis is I have osteopenia, not osteoporosis. That's good news. However...

As you can see in the table below, my spine got worse, although my left hip improved. But because Kaiser didn't scan my right hip, I may still have osteoporosis (-2.5 or lower). If Stanford hadn't tested my right hip, they would have also diagnosed me with just osteopenia.

My guess is I still have osteoporosis. It doesn't matter much, I suppose, whether Kaiser thinks I've improved to osteopenia. The treatment is the same. I continue with Zometa, calcium and exercise.

ER Visit

Summary: Went to the ER due to breathing pain. All tests came back normal.

Back in January, I developed pain on my right side when breathing and with certain movements. I sent a message to my oncologist asking if I should see her or my PCP. Many hours later, I received a reply saying to go to the ER.

I did not want to go to the ER because I've heard you can get stuck there for hours. I called Joy to ask for her opinion. No answer. Called Ate Rose. No answer. Called Emily. She answered! She said I should go because I might have a blood clot. Joy later called back and agreed about going to the ER.

Armed with a book, I drove over to Kaiser. It's less than 2 miles away. I did not have to wait long in the waiting room before I was called in, maybe half an hour. But there was more waiting inside before I saw a doctor. She ordered blood tests and a CT scan.

I was sent back to the waiting room to wait for the CT scan. Three and a half hours later (or maybe it was four; I got so tired of waiting and almost left!), they called me in. The CT scan requires a dye for contrast, delivered via IV. The first nurse attempted to insert the IV and failed. The second nurse took a look at my arm and didn't even try. The third nurse was confident he would succeed, but he was wrong. Finally they brought in an ultrasound to find my vein and got the IV needle in.

Then they moved me to a room and made me wait again! In the meantime, someone came in and did an EKG on me. About three hours later, I was finally taken to the CT scan room. I had asked the doctor, a nurse, and the CT scan technician if the dye would hurt. They all said no. But it hurt! Not as badly as the dye used for MRIs, but it was still painful. In fact, earlier in the evening when the nurse was inserting the IV, I was trembling so badly because I knew the dye would hurt.

When the dye was injected, aside from the pain, I had a sensation of warmth in my throat and between my legs. I have heard of this reaction before, as if you were peeing. Strange sensation.

Anyway, all my tests came back normal. Maybe my pain was caused by a muscle sprain or something, although I don't know what I could have done to cause it. I was told to follow-up with my PCP but never did.

I finally went home nine hours after arriving at the ER. The pain went away after a week or two.

Oh, the cost of my ER visit? Only $50. This was with Kaiser, and the cost varies with the health plan.

Cost breakdown:

Item	Cost
ER visit	$2,555
Doctor	$365
CT scan	$400
EKG	$23
Total	$3,343

Cost of Breast Cancer Treatment

Before I get into the costs, a little explanation of terms:

Billed amount - What the provider usually charges.
Paid by plan - What insurance actually paid. This is substantially lower than the billed rate because there is a discounted rate negotiated between insurance and provider, AKA plan rate.
Paid by me - Difference between plan rate and amount paid by plan.

This is the total cost from the time I was diagnosed until my chemo port was removed:

Billed amount: $2.4M
Paid by plan: $1.1M
Paid by me: $8,600

I didn't actually pay $8,600. I had financial help from Amgen, Genentech and Kaiser. My cost was closer to $4K.

Some notable prices:

Procedure	Cost
Chemo	$440K
Lumpectomy	$46K
Radiation therapy	$100K
Kadcyla	$436K
Chemo port	$27K

Chemo cost is interesting. Some of my infusions were Taxol only, and some were combined with Herceptin and Perjeta which are immunotherapy drugs. The Taxol infusions cost $5K, but when combined with Herceptin and Perjeta, the price shot up to $54K. 

Stanford's prices are highly inflated. Some examples:

Item	Billed amt	Paid by plan
Kadcyla (per infusion)	$91,653	$42,160
Office visit	$712	$214
Bone density scan	$1,243	$572

Price comparison among providers:

Procedure	Stanford	Kaiser	PAMF
Kadcyla infusion	$42,160	$11,410
Echocardiogram	$2,843	$962
Biopsy	$8,800		$4,200
MRI	$7,178		$3,374
Physical therapy		$104	$296

In summary, cancer treatment is expensive. Don't get sick without health insurance.

Six-Month Followup

A year ago I had my last radiation treatment. It seems a long time ago.

On Wednesday I had a follow-up appointment with my oncologist. She's on maternity leave, so I saw a physician's assistant instead. Kaiser seems to use a lot of PAs. I would have preferred to see my oncologist, but the PA I saw seemed knowledgeable and was able to answer all my questions. Everything's normal. No new lumps. My next follow-up appointment is in six months.

The joint pain I was experiencing peaked in May. It's now considerably better although I still get a lot of stiffness after sitting down. My thigh muscles are also weak. I have trouble getting up and down from a crouch. It started in the fall and got worse starting in January. I wasn't sure at first that I was experiencing muscle weakness because there was no reason for it. But it's listed as a side effect of aromatase inhibitors. Going up and down the stairs to strengthen my quads didn't seem to help, but taking the stairs two steps at a time did. I no longer feel I'll one day be stuck on the floor unable to get up.

A new development is occasional nerve pain in my hands and feet (mostly left hand and right foot). The first time I experienced it, it felt like a jolt of electricity in the base of two fingers. So far the pain lasts only a few seconds at a time and doesn't come often. But I'd prefer not to get it at all. I also get pain in my chest, mostly in the area affected by surgery.

After my port was taken out, I got a large area of hard scar tissue. I'm guessing it was about 1.5" diameter. I subconsciously kept massaging the area, and now the hard area is only about half an inch in diameter.

Joint Pain

For a few months now, I've been experiencing slight hip pain. I also noticed that I'd wake up with pain in my finger joints. A couple of months ago, the pain in my hips got a lot worse. I'd have trouble getting out of bed. Going downstairs, I'd have to do it two-footed. However, the pain would go away after a few minutes of movement.

I felt like I was 80 years old. I thought for sure I had arthritis. Then I found an article saying that up to 50% of women on aromatase inhibitors (AI) experience joint pain. They can also experience muscle pain. Several months ago, possibly around the time I started taking AI, I noticed I had difficulty getting up from a crouched position. It's not clear to me whether it's due to pain or weakness in my thigh muscles.

About a week ago, the joint pain started easing up a bit. I can get up from bed almost like a normal person and don't have to walk two-footed down the stairs anymore. But it still hurts climbing into bed and getting in and out of my car. For the first couple of minutes afterward, I walk funny. Getting up from a crouched position, like when putting on my shoes, is still difficult. And sometimes when I wake up in the middle of the night, my left hip hurts when I move my legs.

According to the article I read, the pain goes away for most women by 18 months. I'm only 8 months into my AI therapy, and I'm supposed to take the pill (anastrozole) for five years.

Shoulder Still Frozen

Had my fifth physical therapy session on Tuesday. There's been no improvement in sideways motion of my shoulder, so I decided to stop the sessions. I'm hoping my shoulder will suddenly go back to normal this summer when it will have been two years since my frozen shoulder started. If not, I'll either request PT or see an orthopedist again. I had an x-ray done in February and saw an orthopedist then, but nothing out of the ordinary was found.