Tag Archives: breast cancer

Sorry for the lack of update

Chemo #3 went well . . . but there was quite a bit of aftermath.

First of all, I seemed to get a bit of an infection that required antibiotics. This was on Wednesday, chemo day. I absolutely had a brain freeze and just didn’t think to tell my oncologist (yes, I know — stupid of me) until Thursday evening. (Thanks to my mother for politely pointing out that I needed to make that call immediately.) So I spoke with the on-call oncologist and he insisted I come in for a consult the next day.

So I did.They explained to me in simple terms that any infection may have serious repercussions. That I was not smart to not have told them, and don’t do it again. Moreover, they really don’t want me getting seriously ill because it may delay the next (LAST!) chemo treatment . . . the worst case scenario is that I would have to start all over again. The result of which is that I was given a choice between having a Neulasta shot or coming in every day over the weekend for a GbGH shot. So, despite my reservations, I had the Neulesta.

Now, each chemo cycle has had a shape, although each has been remarkably different. Day 1 sees me with a slight lowering of energy, but I can walk Sasha in the morning and evening. Day 2 sees a significant lowering of energy, but I have been able to walk Sasha in the morning, although it’s not at all something I want to do in the evening. Day 3 has been the worst — absolutely low energy, hard to concentrate on anything, loud noises (even the TV) are painful.  .  . it’s a bad day all around. This is the day that makes people worry — the usual Lisa is greatly diminished, my energy at an extreme low.

Day 4 sees a return of some energy, but also the onset of the bone pain from the Taxotere and the immediate start of dilaudid. So its a tad paradoxical: I *feel* better and have more energy but am ‘out of it’ because of the dilaudid. Day 5 and maybe 6 see increasing energy and are only bounded by the dilaudid. (Day 5 is when people say ‘you look more like yourself, you clearly feel better.’)

This time around, the Neulasta made a huge difference, aided by the infection and concomitant antibiotics, I’m sure. I was more tired, earlier, and the pain started on Day 3. Neulasta pain, btw, is described as ‘bone pain’ but it isn’t. It’s pain in the large muscles and the small of the back (perhaps shoulders), as if you were running stairs or lifting weights and overdid it. It’s not the crippling pain of Taxotere, which truly is bone pain (like you feel when you get a very bad fever).

I know, you weren’t expecting all of this talk about pain.

The final effect, which as easily could be what they mean when they say ‘the effects are cumulative’ is that I continue to be pretty tired. I’m having a hard time sleeping, likely because I’m not getting enough exercise (i.e., none), but I’m too low energy to feel like doing anything . . . other than walking Sasha 2x/day.  So I still get about 30 mins of walking every day.

So I’m thinking of getting a guest pass at John’s gym and going to their yoga classes. I don’t care if I can’t do 1/2 the poses, or can’t do them well. I also don’t care if I can only participate for a week before my next chemo session. It’s a way to get myself motivated, and it’ll be a little stretch (hah! a pun!) for me, but not too much.

So, I am recovering, albeit slowly. I’m taking care of myself. And I am VERY glad I only have one more session to go.

Losing My Hair

First off: my fever broke Wed night. I took it easy yesterday, but am back to work today (tho’ likely not for the full day). Things are starting to get a bit critical and I’m needed on site.

Most importantly: on time, and unmistakably, I am losing my hair.

My advice for anyone who may read this because they are in a similar situation: if you think you are losing your hair, you aren’t.

My scalp has hurt for a few days, but that so easily could have been the fever. This morning I got up and into the shower and stepped under the water. Hands running through my hair pulled out bunches. Even though I was (sort of ) expecting this it was a very bad moment. A freak-out kind of moment.

I cut my hair short in expectation (dread) of this. I am so glad I did. Losing your hair is — and I recognize that this is entirely a me thing — losing your hair is MESSY. Seriously, it get s everywhere. Long hair would have been unbearable. Not because of the loss, but because I would have hair in my eyes ALL THE TIME or look down to see a clump just lying on my sleeve. Ugh.

Yes, this happened 30 mins ago. Mourning will occur later. For now, I am glad I listened to my intuition and prepared for this . . . I have so much hair it is going to take a bit for it all to go. I feel ‘safe’ going to work . . . but they’ll be surprised on Monday.

Sunday update

I’m hurrying to write this before my dilaudid ‘kicks in’ and I become illiterate once again.

I think I got an infection in my breast yesterday — it was hot to the touch, slightly swollen, and red, like sunburned. We called my surgeon (they have a service that puts you through to him directly if he can take the call — very cool) and he put me back on an antibiotic. Took two last night, along with a lot of visualization, and I’m noticeably better today. Whew. (The only ‘fix’ for an infection with a breast implant is to remove the implant and wait several months for the tie to heal, and then re-insert the implant. NO WAY.)

I’ve been feeling a lot of pain, even with dilaudid, and so I’ve been using the hypnotic WAV my psych. taped at our last session. It’s a profound difference. I’m starting to alter it to add in ‘you will feel less pain each day as you heal completely’ because the dilaudid runs out tomorrow and I already know that OTC drugs are not going to work.

But I will be so glad to get off the narcotic. I like the lack of pain, but hate the side effects of fuzzy thinking, lack of motivation, and physical  . . .  blockage. (I don’t want to say more, but its the most common side effects of narcotics, ok?)

I’m looking forward to going for a walk, maybe even two today. That will be a big step forward. Ambien is working to help me sleep, so I’m back to 8+ hours/night, thank goodness. Soon normality will return. At least for a while.

The Tunnel Has An End

A bit of an update.

  • I love my oncologist. If anyone wants a recommendation for an oncologist in the South Seattle area, contact me. I’ll gladly give you his  information. He is just plain NICE, with a warm ‘bedside manner’ and truly listens.
  • If I have chemo and Tamoxifen, my chance of having a recurrence of breast cancer is in the single digits. THAT is worth the trauma.
  • I will very likely lose my hair.
  • I’m not happy about this.
  • I will deal. I will buy lots of lovely hats and learn to wear a scarf. It will likely be gone by the end of March, and won’t start returning until late May.
  • There is some evidence that post-chemo hair grows in without gray, and curlier. So I may look 20 years younger (at least until the gray returns).
  • I’m still having some trouble sleeping, but it’s improving.
  • I’m really glad J. is home (he changed his plans to make it home in time to come with me to meet with the oncologist). I have a partner, not a boyfriend.
  • (J’s mom is improving: no more fever, and she’s off the respirator. The medical staff are really positive about her recovery.)
  • I am scheduled for my 2nd surgery next Wednesday (1/20) at ~10:30am PT.

Overall, I am in a fairly good mood. Mostly I think that my stubbornness is turning out to be an asset. I can’t do much other than move forward, so I am. This is the crap part, but it is not forever.

Just When You Start to Hope . . .

I got some big news on Friday afternoon and decided to share it with the world (or at least the 20 of you who read this blog and all future google searchers . . .) so forgive me if I repeat information you already know. Also, I may give you more detail than you really want, and I apologize in advance for that.

As a general update: back in early December I met with an oncologist to discuss how necessary it is for me to have chemotherapy. I am a perfect candidate for a new test that looks at cancer tumors at a genetic level and assigns a percentage of likelihood of that cancer recurring in the next 10 years. A low number means a low likelihood, and therefore a poor candidate for chemotherapy. A high number means a strong likelihood of the breast cancer recurring and making it more necessary for chemotherapy.

While waiting for these results, I’ve been taking care of myself and healing from the mastectomy. At this point I can go back ‘any time’ for the 2nd stage of my reconstructive surgery, which involves putting the implant in. This includes a ‘re-excision’ of several more millimeters of tissue from the inside of my breast to give me a clear margin*, which was not 100% successful during the original surgery. Good news: I’m told that the recovery from this operation is days, not weeks; moreover, I should find the implant much more comfortable and the BLO** will look much more like a breast than an object.

On New Year’s Eve, John’s mother was taken to the local hospital in Charlotte in an ambulance, apparently the victim of pneumonia. She did not respond to the medication, and had a sudden decline in her ability to understand things said to her, became unable to recognize family members, then lost her ability to speak. On Monday she was correctly diagnosed as having Bacterial Meningitis. John flew out to see her on Wednesday night, and will be there through Monday. Although she seemed to improve for a day, as of a few hours ago, she had been moved to the ICU unit in the larger hospital in Charleston. We literally have no idea what her condition or prognosis is or will be.

Friday afternoon my oncologist called me. My test results came back and my number is 42 (on a scale of 1-100). That means that I have a 42% chance of a recurrence of breast cancer in the next 10 years. Even with Tamoxifen my likelihood of recurrence is 28% in the next 5 years. I had hoped for a much lower number, but it is clear that chemotherapy will be necessary. I have an appointment to speak with my oncologist on Monday morning.

Chemo for me will be a combination of 2 drugs, and will be four sessions, one every three weeks. A piece of good news is that he does NOT feel I need to start chemo immediately. I have time to take care of some things first.

At the moment, and keeping in mind that all of this can change in a heartbeat (Mr. Toad’s Wild Ride, anyone?) my plan is to have the 2nd surgery within the next few weeks (AFTER Mercury goes direct), giving myself at least 4 weeks to recover before starting chemotherapy. John and I are planning to go to the opening weekend of the OSF in the last week of February. I would start chemo on or after March 2nd, and my last session would be in early May.

As always, your good wishes, prayers, white light, positive vibes, and energy is appreciated and welcomed. I am truly blessed with such good people in my life, and I promise that I don’t hesitate to reach out and ask when I need help.

*the margin is an area from around the cancer tumor that is completely clear of cancer cells. It varies in size based on the size of the tumor. My margins were not 100% ‘clear’ (of cancer cells), so I need to have an additional layer removed.

** breast-like-object

It’s been an Exciting Week

I’m still trying not to type too much . . . but life requires it, so I’ll just be brief-ish.

J’s mom went into the hospital last week, I believe on NY’s Eve. They thought it was pneumonia, but antibiotics didn’t seem to work, and then she started to have physical issues, including not being able to communicate and unable to eat. THEN she began to not recognize family members. She’s in her early 80s, so this is not good. He made plans to fly out there (there = South Carolina) Thursday morning. Yesterday they diagnosed bacterial meningitis, which is VERY NOT GOOD (25% chance of mortality). This morning his dad called with good news, she’s able to communicate again, and recognizing people. He’s still going . . .

Except that his flight was canceled. So he called me and I suggested going tonight instead. So he’s leaving on a red eye tonight through Monday.

That means I am alone for the weekend. With Sasha. Fortunately, I have good friends and a couple of them are going to come over and go with me to the lake to swim her. I can manage the rest. J. has put gas in the car, is doing a foodshop so I have supplies on hand, and I’m making sure that anything I might need help with either doesn’t need to be done, or we’ll do now.

Because while my meeting with the pain specialist went well, and I have high hopes . . . at the moment I am still in some amount of pain. (Note to self: I think ‘post hypnotic suggestions’ don’t work well on you.) More on that in another post. Short version: it WILL help, and I already feel comfortable recommending this specialist to others.

In the end, I’m a bit freaked out. I’m reassuring myself that I will be fine, that I can call on others for help, and that I can do this. What is  . . . freaking me out . . . is that these will be the first days since my surgery (8 weeks ago tomorrow) that I will be absolutely on my own.

I’m not going to dwell on that now. Instead I am going to change the subject.  Today I found my dream house (although I can’t have it).

It’s perfect. Want to see?

ok . . . ok . . . I get it

I swear, I do listen to y’all. More important, I act on your advice.

It seems like everyone ‘yelled’ at me yesterday, both here and via email. I was taking action even then:

  • I met with my therapist: I am not crazy, I am in pain, I need to get on top of the pain as my first priority.
  • I called my plastic surgeon. His MA thinks this is ‘just’ nerves healing, and not much can be done because it isn’t an emergency. In any case, I’ll see him 1st thing . . . Tuesday morning.
  • I have an appt on Wednesday with a clinical psychologist who specializes in pain mgmt using hypnosis.
  • I had a lovely dinner with friends last night and it was a marvelous distraction from the discomfort. I had 2 glasses of wine and although it still took awhile to get to sleep, when I did I slept well. (A really good sign.)
  • There are periods of time when I do not hurt, but a lowering of medication produces pain, so we’re working with that.
  • If I do not get an alleviation from the pain by this afternoon, we’ll start adding in some of the leftover prescription meds I still have on hand.

I truly appreciate your advice and support. As you can see, I continue to explore all of the options and am doing my best to work all of this out.

Apparently, I am Injured

WARNING:

A whining, ranting, and generally self-pitying post follows

Perhaps this is obvious to everyone else, but I really though that, SEVEN weeks post-surgery, I would be in better shape. Or at least no longer taking much, if any, pain medication. Every tells me to take it easy, and not be so hard on myself, but I really don’t think my expectations are that great.

Especially since these last days have seen a marked increase in my pain/ discomfort level. I am almost constantly experiencing a ‘buzzing’ sensation in my side and/or in the BLO, it’s somewhat akin to a feeling of heat, only without the actual change in temperature. I have stabbing pains, muscle spasms, twitches, and aches. These feelings often migrate into my underarm and bicep.

I am, to put it mildly, VERY grumpy. I snap. I growl. I am snarky and tetchy. I don’t like anything and am m ore than usually difficult to please.

I am tired.The lunesta seems to be losing its ability to help me get to sleep, and I’m spending hours each night lying on my side waiting for sleep to come. I’ve added hot cocoa (all natural) and herbal teas, and they help. . . but not enough.

I feel weepy and I wonder how long it will be before I feel well again.I truly wonder whether the reconstructive surgery is worth it by any measurable scale. Certainly not on a comparative one, not at this time. I hurt more now than I did with a fresh gaping wound.

Last night I nearly lost it BIG TIME when I realized that I have even more surgery in my future and I literally couldn’t imagine doing this again. Yet, the plan is to do it at least twice more, to varying degrees.

I hurt.

Meeting the Oncologist

I continue to be fortunate in that every medical professional I’ve worked with (with a few minor exceptions) are warm, caring, knowledgeable, competent people. My oncologist is one of those. He could see how nervous I was, and one of the first things he did was to start at the beginning and have me tell him about what my cancer journey has been like.

I finished with “and so it was more than a little shocking to be told on Friday that I am a good candidate for chemotherapy.” He immediately said: “I’m not so sure about that. It’s one thing I want to talk with you about.”

It turns out that there is a test (Oncotype DX) that is for a specific population of women with breast cancer. This test provides a very specific answer to the question: does she have a high likelihood of breast cancer recurring (and therefore is a good candidate for chemotherapy)? In reading about it, it looked liked I was a perfect candidate (invasive, Stage I, ER+, lymph node negative). But it is very new (just out of clinical trials in 2007) and I wasn’t sure if my oncologist knew about it, and if I really was a good candidate.

He did, and he thinks I’m a ‘poster child’ for the test. Good thing: they (the lab that does this test is in Sunnyvale, Ca, I believe) examine the tissue already removed. I don’t have to do anything. We’ll get the results in a week or two.

IF I DO have chemotherapy, it would take about 3 months with chemo sessions 1x/3wks. The plan is that I would be in chemo for a day, recovering for a couple of days, and then working like normal for a few weeks. So, disruptive, but not horrid. And fairly brief.

I left that office feeling like I’d been given good news, and it was sort of appalling that I felt that way when really all I’d been told was that I’d be waiting for an answer again.

This is one of the cruelties of cancer, your definition of ‘normal’ becomes skewed. I wonder how long it will take for my definition to right itself?