Sorry I haven't posted

I have been struggling with loss of appetite and off and on constipation. So I check Facebook and my email and that is about it. I have beenable to decrease the pain meeds and am takin Zofran 2/day now. Trying to wean off the dilaudid now.

I actually did some paperwork yesterday and need to pay bills this weekend and get my checkbook caught up. Also, with shaky fingers, it is hard to trim my fingernails, so they are way too long for me (perhaps normal for many).

Eddie started school last week and wishes summer wasn't over. He is with his dad this weekend. He is now as tall as I am.

Decided to go with COBRA over OMIP for the last three months of 2011 as I save a few hundred dollars because of acupuncture.

I guess that's all. Life isn't too exciting. Oh. I have a CT scan on Monday and perception on Friday. We will see what else to do after the CT scan on Monday.

Qigong, CT Scans, and Mood

As I mentioned in the post a couple of days ago, I am doing much better, emotionally and mentally. I attribute it to both qigong and the intentional breathing (breath in strength and energy, breathe out pain and sickness and worry).

White crane qigong is partially meant to dispel sadness. It helps your lungs move qi and it also gathers energy to your heart. I think that has really helped my mood. So, even though I had persistent pain yesterday (and it happened again this afternoon although not as bad even though I remembered the nerve pain pills), I could handle it easier. (At the moment, the back of my arm/shoulder is tingling.)

So, I'm good.

I also picked up a copy of my CT scan results. Other than the mass under my armpit and also the one on the right side of my breast bone, no new masses, stable disease in the bones, scarring in the lungs, and some cysts on my liver. I also just confirmed that I don't think the main artery supplying the latissimus muscle is not involved. I think I will have the easier surgery, but I haven't confirmed that with the plastic surgeon yet.

As for the breast bone mass, I don't think the immunotherapy can work on that area as well because the tissue has been compromised by two rounds of radiation. The tissue under my arm is compromised as well, so there's been growth there because the t-cells can't get in there to do their job. We will deal with that breast bone tumor later . . . I'm not too worried as it's growing much more slowly.

Here is a website for the lat flap for any inquiring minds:

Lat Flap

I will have a skin graft from my left thigh - I think that skin graft will cover the donor site, but don't quote me on that.

So, good news overall. Good mood. Good news on the CT scan.

CT Scan this am

cT scans take a lot out of me. Not sure if it is the iodine contrast, the fact that I don't get breakfast until afterwards, or maybe I just didn't sleep well. I need to take it easy this pm.

Anyway, I will need to see if I can schedule appointments with Dr. K after a CT scan more often. He pulled it up as soon as I told him I had it. The good news ismthat it seems like the blood supply to the latisimus muscle does NOT have cancer involvement, so I will get the easier pedicle flap, which means the blood supply is still attached to the flap with reconstruction. It is a shorter surgery and a faster recovery time!

It was hard, though, to keep my left arm above my head because of the pain. I just tried to deep breath through the pain and when I felt myself stiffening up with the pain, I just tried to relax arm and shoulder muscles.

The other spots of cancer (sclerotic or scarred lesions - where there are calcium layers around clusters of cancer cells - in the bone marrow were stable and the tumor at the sternum) were stable. The lung was okay, we think.

Dr. K did say he isn't a big fan of surgery, but I just kept saying that I wanted this thing off/out of my body. I am so tired of changing wound dressings. I hope he understands that chemo wasn't controlling it.

Anyway, he is okay with the surgery and said he would trust the surgeons when they say that this is the right course of action.

I am so ready!

Countdown: 7.5 days and 15 dressing changes.

If There Was a Voice Speaking, I'd say, "It's music to my ears!"

So, what's the equivalent for sight! Maybe a "sight for sore eyes!" But that doesn't seem right.

Ah, what am I talking about? Well, it's the CT scan report, which is as follows:

"CONCLUSION
1. There has been response to this patient's treatment regimen. The pulmonary nodules involving the lingual and left lower lobe are dramatically less pronounced. The irregular and linear type densities which remain may reflect post treatment changes/scarring. The conglomerate adenopathy noted within the left axilla is not completely visualized, however it also appears less prominent. There is a low attenuating structure noted more anteriorly and inferiorly, which may reflect necrosis. In addition, the right peristernal lesion has decreased in size. The small lesion involving segment 5 of the right lobe is also much less prominent.
2. No new nodules, masses or regions of adenopathy are identified.
3. Stable appearance of the sclerotic lesions involving the axial and appendicular skeleton compatible with osseous metastatic involvement."

There's a 4 and 5, having to do with the evidence of surgeries and my P.A.S. port in my arm.

Earlier in the report, it said that "The visualized liver and kidneys appear unremarkable."

Translation: The densities they see in the left lung probably reflect scarring; the lesion under my armpit, the right "peristernal" lesion (i.e., on the right side of my breast bone, near the TRAM flap scar, something in the right lung (which I didn't note before) is also smaller. The lesion that is "anterior and inferior" is a satellite lesion in the armpit, located lower and toward the back looks like "necrosis" (i.e., dead or dying tissue). I do have multiple lesions in my bone marrow, but it appears stable (and probably will never change). Most importantly, no new nodules have been identified.

Cool, eh?

CT Scan Results and Visit with Dr. K

Or, aka, "Some Good News and Some Expected News".

The good news is that the treatment regimen appears to be working systematically, that is, throughout my body, in my system. There appears to be only scar tissue in the lungs now - *maybe* one spot that may still be a tumor, but for the most part, the areas are smaller and it looks like scar tissue. I had multiple spots in my lymph nodes in early fall - no mention of those on this CT scan. And, a suspicious spot on the liver (which Dr. K didn't think was a tumor) is gone.

So, the treatment is working at some level. That made me feel better about how fatigued I feel. I'm not quite bouncing back from the last chemo - it's getting harder to do so. Even today, ten days post treatment, I still feel dead dog-tired.

But the CT scan still shows a mass under my armpit - which I can see, so obviously I knew it was there. The good news is that the diseased tissue doesn't extend all the way down to the bone - there's a nice layer of tissue so the surgeon might be able to get 90-99% of the cancer there. Also, there's a spot that is on the scar tissue of my TRAM flap breast, near the breast bone, is apparently a tumor. It's grown in recent months, but I didn't really notice it until a month ago. It's a hard nodule about 3cm long and maybe 2cm wide. Plus there are spots in the bone marrow, but it doesn't look like there are more of them since the last one.

So, what's the plan, man?

Because February is a busy month for me with all sorts of work and fun activities, and the surgeon, Dr. F, is away at a conference around March 3-4, it looks like I will have surgery the week of March 7. That will give me three weeks of recovery before classes start March 28.

So, I have my last HAZ treatment on Friday the 28th - Herceptin, Abraxane, and Zometa. Then, I will have another Herceptin treatment upon my return from Hawaii on Feb 14th and before we go to Eddie's school tournament. Then, I'll have three weeks off of any chemo before surgery.

I'll visit the radiation oncologist in mid-February because we might do some radiation to get rid of any residual cancer in the area. And probably do radiation on the nodule near my breast bone. That may happen through the beginning of spring term.

There's some light at the end of the tunnel, in other words. In six weeks or so, I will be done - you hear that, DONE - with the wound in my armpit. I'll say that again, DONE with dressing changes in about six weeks. DONE.

Can you tell? I'm happy about that.

Afterwards, we just need to start thinking of what to do next. That'll depend on where I stand.

This also means that beginning two weeks after my last Abraxane treatment, around mid-February, my hair can start growing back. That's good because I think my eyebrows and eye lashes are definitely thinning out lately. I haven't had bushy Eskimo brows in a few months! LOL

I also hope that Dr. H, the plastic surgeon, can get rid of the dog ears at my waist since he will be there anyway taking tissue from the Lat area for a LAT flap. He may also need to take out the implant and put in another one since Dr. K and I could both see that the cancerous tissue went all the way to the implant. I hope that they make implants that are flatter - i.e., not so round - since my TRAM flap boob is flatter rather than round. He said he can also lower it so that I'm more even.

Looks like it will be a good spring for me - no wound, maybe more even boobs, no dog ears, and hopefully, NO CANCER!!! Well, there will always be evidence of cancer in my bone marrow. But let's say NO GROWING CANCER!!

I am saddened . . . And tired - earlier I was mad at the nurse

I didn't sleep well at all last night - too much caffeine I think - and then had to go without eating for my CT scan this morning. So I was not in a good mood at all. I ran into work to do some accounting stuff, then went to the scan.

I got mad at the IV nurse because she couldn't get blood return using the port in my arm - and yet the nurses at the Infusion Center haven't really had problems - so she stuck me twice in the port but rather than be gentle, she just jammed it in. Then she try to get blood by pressing hard on the port - ouch - like three times. She gave up and then decided to put in an IV on my other arm, right on the bone. Ouch again!

She was brusque, didn't apologize for her roughness, and then left.

I lay there crying in anger - and I had to be still for the CT scan - because I was just so tired to do much else. I got through the scan - it went fairly quickly when all was said and done. By that time, I had gathered myself and then told the tech I thought she was unnecessarily rough. But I said it calmly and didn't blame him. He apologized for her. Next time, I may get the IV started at the Infusion Center, where the nurses are compassionate and friendly and I know them. Then walk ocher to CT with everything ready to go.

Then, in catching up on other blogs and read about Daria, at Life With Cancer. She lives in Edmonton. Just last week, she was feeling melancholy because she felt like she was deteriorating. Unfortunately, it looks like she was right - her husband posted for her, said she wasn't able to post herself, and she was going to Hospice.

Damn cancer. Please send good thoughts and prayers to her and her husband. She has been fighting this for a long time, was always friendly, sweet, and supportive. She will be missed.

No port for now . . . And CT scan results

I saw the wound care nurse today and she felt that my wound is not infected. And Dr. K didn't see any signs either, but he gave me a prescription for Levaquin, in order to get rid of any infection I might have - some bug that I may have picked up this last weekend. I took the first dose this afternoon, on an empty stomach and it's made me a little queasy. Now that I have eaten some, I am feeling better. But I got off my schedule a bit with the Ibuprofen and Tylenol, so I have had chills and a headache again. I think I am getting back into it again and I am feeling better.

However, I didn't sleep well last night -aches and chills, then too hot and sweaty- so I have been tired and that coupled with the ongoing fever and chills, I find myself really weepy. I don't feel strong today at all. And I don't like feeling that way.

I asked Dr. K about the port issue and he explained how both the chest one and the arm one work. He did say that it might be better to get the arm one because of the scar tissue and the swollen areas under my collar bone. However, he doesn't want to put in a port at this time because of the fear of infection. If the armpit wound gets infected, it would cause the port to be infected, too, and it would have to come out. So until the wound heals, no port. For as long as my veins can handle it.

As for Abraxane, I will be on it for at least two months and then we will reevaluate. If it works, then I will go on it for another four
months. That gets me within the timeframe for when the Herminator-2 cells should be working well, so with any luck, I could go off Abraxane then.

Then the CT scan results. The bad news is that in addition to the main lesion and satellite lesions in my armpit (the main one being about the same size), the radiologist felt that there is now a lesion on my liver (although Dr. K didn't seem to be completely sold on that idea), there are spots above my right collar bone (which I knew about), in the upper center of my chest (where there was some extra tissue after reconstruction -it seemed bigger and more tender), some suspicious pictures in my right groin and also some growth on a vertebrae in my spine. The good news is that the largest lesion in my left lung only grew 0.1 cm since mid-July. So the biggest problem areas from July appear to be about the same size, which I hope means that the t-cells were doing their job in those areas. Maybe, just maybe, this means that the lesions that were there at the time of the t-cell infusions have stabilized (meaning that it is working) but new spots that have cropped up in the last couple of months (remember no Herceptin or Zometa since late July) are not yet affected by the Herminator-2 cells, that my body's immune system is not yet primed enough to work on these new spots.

So, yep, it's time for Abraxane. I will also get Zometa again.

I have been trying hard not to feel too sorry for myself. I don't like feeling helpless. But hard to do when I am also fighting an infection.

However, I already feel less weepy now that I have had the Levaquin. Can it be working that well already? And I am back on track with the Ibuprofen.

P.S. My temp is now 97.9, about three hours after I first posted this entry.

Tumor Markers and CT Scan Results

I had a Herceptin treatment on Monday and they drew my blood.  Got my tumor marker results earlier this week:  the CEA is 44.3 (down two points from last time) and the CA15-3 is 29.2, down by 0.7 points from last time.

This is the first time that the CEA went DOWN in 18 months.  Yippee Skippy!  Yay!

The CA15-3 is below. Remember that anything 33 and under is "normal":

Sept 2007 - 23 U/mL
Jan 2008 - 31 U/mL
Mar 2008 - 36 U/mL
June 2008 - 23 U/mL (started radiation that month)
Aug 2008 - 18 U/mL (week of August 4th)
Sept 2008 - 14.5 U/mL YAAAAAAY!!!
Oct 1 2008 - 19.6 U/mL
Oct 31 2008 - 15.3 U/mL
Nov 28 2008 - 19.5 U/mL
Dec 30 2008 - 16.0 U/mL
Jan 22 2009 - 15.4 U/mL
Mar 2 2009 - 17.8 U/mL
Apr 8 2009 - 19.6 U/mL
May 5 2009 - 18.4 U/mL
June 4 2009 - 19.7 U/mL
July 2 2009 - 22.1 U/mL
Aug 3 2009 - 29.7 U/mL
August 31 2009 - 31.9 U/mL
Oct 3 2009 - 38.7 U/mL
Nov 2 2009 - 36.4 U/mL
Nov 30 2009 - 38.5 U/mL
Dec 28 2009 - 37.5 U/mL
Jan 25 2010 - 33.8 U/mL
Mar 8 2010 - 30.9 U/mL
Apr 22 2010 - 30.0 U/mL
Jun 7 2010 - 29.9 U/mL
Jul 19 2010 - 29.2 U/mL

And the CEA numbers. Anything 3.8 and under is "normal".

CEA
1/2008 - 1.2 ng/mL
3/2008 - 0.9 ng/mL
6/2008 - 1.0 ng/mL
8/2008 - 1.1 ng/mL (need to double check this number, but it was in that 0.9 to 1.2 range)
9/2008 - 0.5 ng/mL
10/2008 - 0.9 ng/mL
10/31/2008 - 1.2 ng/mL
11/28/2008 - 1.2 ng/mL
12/30/2008 - 1.1 ng/mL
3/2/2009 - 1.4 ng/mL
4/8/2009 - 1.6 ng/mL
5/5/2009 - 1.9 ng/mL
6/4/2009 - 3.0 ng/mL
7/2/2009 - 3.7 ng/mL
8/3/2009 - 4.2 ng/mL
8/31/2009 - 5.1 ng/mL
10/2/2009 - 5.7 ng/mL (or was it 5.8?)
11/2/2009 - 7.6 ng/mL
11/30/2009 - 10.5 ng/mL
12/28/2009 - 13.2 ng/mL
3/8/2010 - 22.9 ng/mL
4/22/2010 - 28.9 ng/mL
6/7/2010 - 46.3 ng/mL
7/19/2010 - 44.3 ng/mL

As I mentioned in my last post, Dr. S. from UW stated that what they are seeing is that the t-cell infusions take a little longer to work against the cancer, so I should give it a couple of months.  I personally think it's good news that it went down.

As for my CT scan, the largest of the tumors in my left lung grew by about 0.4 cm in 6 weeks.  Everything else is roughly the same as the time before.  There was a suspicion of a "subtle change" in my liver, but they suggested a more detailed scan or MRI in 3-6 months.  I'm not going to worry about that one just yet and just allow the time for the t-cells to work.

Dr. S from UW also said that CT scans tend to show inflammation.  So, if there is growth seen in the tumors on the CT, it might be due more to inflammation than to more active cancer activity.  Remember that when t-cells are doing their work, it is an inflammatory response.  (Think about when you have a cold and your lymph nodes in your neck get swollen - they are inflamed.  That's the t-cells working.)

My interpretation of the growth of the tumor (or tumors) in the left lung is that there is some inflammation going on there and the t-cells are doing their job on those tumors. 

That's my story and I'm sticking to it!

Results results results

So, I had a CT scan while in Seattle last week (on Tuesday).  The largest tumor in my left lung had grown about 0.9cm (to 3.4 cm by 1.2 cm) over the past five months.  There were also larger than normal lymph nodes under my left armpit (very visible to the naked eye), under the left clavicle, near the breast bone, and in my left groin.  And, maybe a cancer nest under the skin under (but not in) the right armpit.  I knew about all of them so I'm not too too worried about it.

Yesterday was my Herceptin treatment.  I was tired from it again - although hard to tell if it was from the treatment or not getting a great night's sleep the night before.  It was also a treatment where they got my blood to measure my CMP/CBC and tumor markers.  I also asked Dr. K if he could get my Vitamin D level.  My vitamin D level was 21.5 and "normal" is 30.  I started taking 1,000 IU's of Vitamin D3 about a month ago; I just called Dr. K's office and asked him what he thought I should do and his reply was that I start taking 2,000 IU's each day. 

Vitamin D3 plays a role in our body's immune system and several studies suggest that insufficient Vitamin D3 in our bodies lead to increased cancer risk.  So, you bet I'm gonna increase my Vitamin D3 level!

Okay, here's the tumor marker information:

The CA15-3 is below. Remember that anything 33 and under is "normal":

Sept 2007 - 23 U/mL
Jan 2008 - 31 U/mL
Mar 2008 - 36 U/mL
June 2008 - 23 U/mL (started radiation that month)
Aug 2008 - 18 U/mL (week of August 4th)
Sept 2008 - 14.5 U/mL YAAAAAAY!!!
Oct 1 2008 - 19.6 U/mL
Oct 31 2008 - 15.3 U/mL
Nov 28 2008 - 19.5 U/mL
Dec 30 2008 - 16.0 U/mL
Jan 22 2009 - 15.4 U/mL
Mar 2 2009 - 17.8 U/mL
Apr 8 2009 - 19.6 U/mL
May 5 2009 - 18.4 U/mL
June 4 2009 - 19.7 U/mL
July 2 2009 - 22.1 U/mL
Aug 3 2009 - 29.7 U/mL
August 31 2009 - 31.9 U/mL
Oct 3 2009 - 38.7 U/mL
Nov 2 2009 - 36.4 U/mL
Nov 30 2009 - 38.5 U/mL
Dec 28 2009 - 37.5 U/mL
Jan 25 2010 - 33.8 U/mL
Mar 8 2010 - 30.9 U/mL
Apr 22 2010 - 30.0 U/mL
Jun 7 2010 - 29.9 U/mL

And the CEA numbers. Anything 3.8 and under is "normal".

CEA
1/2008 - 1.2 ng/mL
3/2008 - 0.9 ng/mL
6/2008 - 1.0 ng/mL
8/2008 - 1.1 ng/mL (need to double check this number, but it was in that 0.9 to 1.2 range)
9/2008 - 0.5 ng/mL
10/2008 - 0.9 ng/mL
10/31/2008 - 1.2 ng/mL
11/28/2008 - 1.2 ng/mL
12/30/2008 - 1.1 ng/mL
3/2/2009 - 1.4 ng/mL
4/8/2009 - 1.6 ng/mL
5/5/2009 - 1.9 ng/mL
6/4/2009 - 3.0 ng/mL
7/2/2009 - 3.7 ng/mL
8/3/2009 - 4.2 ng/mL
8/31/2009 - 5.1 ng/mL
10/2/2009 - 5.7 ng/mL (or was it 5.8?)
11/2/2009 - 7.6 ng/mL
11/30/2009 - 10.5 ng/mL
12/28/2009 - 13.2 ng/mL
3/8/2010 - 22.9 ng/mL
4/22/2010 - 28.9 ng/mL
6/7/2010 - 46.5 ng/mL

My gut feeling is that this might constitute a spike in the CEA.  Remember that last week, I had Cytoxan and the t-cell infusion.  The CEA measures the amount of dead blood cells (if I remember correctly and some research that I shared awhile back said that a spike in the CEA might suggest that a treatment is working as the number of dead cancer cells has increased due to the treatment. 

So, at the moment, I think that the combo treatments I've received are helping get the cancer back under control.  Yay!

CT Scan Results

My doc called me with the CT scan results yesterday. It was as I expected: the three tumors in my left lung are still there and they have grown over the past six months. The largest grew from 2.0 to 2.5 cm. That's 0.5 cm in six months. Compare it to 1.0 cm in the three months before that (that same tumor went from 1.0 to 2.0 cm in three months). So, Tykerb plus Femara (or whatever combination it was) slowed the growth down, but didn't stop it.

The lymph nodes under the left arm pit have sorta grown together into a 5cm mass. That will hopefully disappear with the new treatment. Other lymph nodes around the lungs (under my breast bone, near my aorta, and in my pelvic region) have also grown.

On the right side, there are four ribs, behind the breast tissue and back, that have extra calcium deposits that are indicative of healing. We don't know how long ago they were broken or how long they've been healing. (Note, the last time I noted healing ribs in Fall 2008, there were only three ribs involved, so apparently, another rib fractured.) The little nodule I felt under my RIGHT arm pit, near the breast tissue, might be scar tissue, but my doctor feels that it's probably a little "nest" of cancer cells.

For now, all of them will be treated with whatever combination of drugs we decide on.

My doctor also gave me the contact info for the UW folks - it's the Her-2 Study Group. They may accept me as a patient - and maybe even harvest some of my t-lymphocytes to create a vaccine to help stimulate my immune system to attack the cancer. I'll contact them on Monday.

In the meantime, my folks and brother are continuing to move things into the house. My brother is all moved in. We rented a U-Haul and got most of mom and dad's big stuff. I cleaned out my files . . . and have almost put all of them away. So, things are progressing slowly but surely. Whew! Yay!

CT Scan Results .. . OR My six-month "vacation" is over

As you all know, I had a CT scan last week. My doctor, Dr. K, called me with the results this afternoon. After getting the tumor markers yesterday, I wasn't too surprised to hear that the three spots on my left lung are bigger. He did say, however, that after three months time, they could've gotten a lot bigger. But they grew by about half a cm. The good news is that there aren't any other spots.

So, as I said yesterday, I'm going back on a full dose of Tykerb and I even started taking a smaller dose of Xeloda today. I haven't had Xeloda since December and my last full dose of Tykerb was in mid-January, before my surgery. Since April, I've taken about a half-dose of Tykerb (not consistently). So, that little bit of Tykerb probably helped to keep things from growing too much.

It was my little experiment to see if I could go off the meds. My dad called it "Russian Roulette". I found out that I can't. Things aren't really bad. It could be worse. So, I go back on the two meds and see how things go in three months with a new CT scan and I will also have my tumor markers monitored monthly. I probably won't take that chance again. I've got my son to raise, a life to build with Scott, my house to finish, and the Center for Indigenous Sciences to work on!

I was a little depressed yesterday - both from the tumor marker news and from some other things going on - and one of my friends told me that rather than fighting the depression and the envy, I needed to embrace those emotions since they are part of me - my shadow self. By embracing them, they lose their power. She also told me that I should love my cancer to death - not to my death but to the cancer's death. I need to laugh it to death. That requires a reorientation of my thinking but doable, I believe.

In other news, Scott's wallet was taken today - we think perhaps where he goes to massage school as the charges on his debit came from that same neighborhood. They stole about $200 before he discovered it. The bank will give him his money back - insurance covers that - but it might take a couple of days.

My acupuncturist told me that my challenge will be to retreat - start saying no - and make sure to balance all of my do-er/yang energy with yin/relaxing energy. My parent has been telling me to slow down. Scott wanted us to "chill" this week-end. I guess I best do that, huh? : )

So, not great news. Got a plan, though.

Take care, people! Love ya! Thank you all for your support!

CT scan today

I had a CT scan today - not sure when I'll get the results. If I don't hear from Dr. K by Friday, I'll give him a call. I see him July 10, though, so he may just wait until I see him.

Tomorrow is my zometa treatment day - will have blood drawn for tumor markers. I may get one of the results later on Thursday, but probably not until Friday.

As for Eddie's lice, there are less and less signs of the little buggers. I only found a handful of nits last night and this morning. I used this gel/shampoo treatment on him tonight and then I had to comb out the gel ... I think I combed out three lice - I think. It's hard to tell. They were little dark specks, anyway.

Scott's poison oak reaction was really bad the last day or two, so he finally went to the doctor today and got a prescription for prednisone. The rash was really weeping but today, they are finally drying up.

Not getting much writing done. Too much administration - reports, financial stuff, travel planning, meeting with students and others who are doing work for me so I need to keep up with what they've done and get them all started on something else. Phone calls to clarify a potential writing project. Gak!

What I need is about two full 8-hours of uninterrupted days to work. That's a luxury I haven't had in a long time. Whew.

Anyway, enjoy the nice summer weather we're having!

A Visit with Dr. K

I saw my oncologist, Dr. K, yesterday. We talked mostly about the lung spots on the CT scan. He even showed me the CT scan, which was kinda cool. Here were the questions I asked:

1) How likely is it that the lung spots are metastases if my tumor markers are low? He said that it is "less likely" than if my tumor markers were going up. We then looked at the history of my tumor markers. The CA15-3 was as high as 36 in March 2008 and that was when we found that it was in my skin and my bones in February 2008. It was 18.4 last month. Anything above 33 is suspect. But this is just a gross measure . . . sometimes it happens that you have active cancer but the markers are still low. Still a low tumor marker is usually a good thing.

2) The CT scan also found that I had one or two enlarged axillary lymph nodes in my left arm pit. I've been able to palpate one of them and when I do, it moves around quite a bit. I told him that I'd read that if those lymph nodes are enlarged and, generally, if it is cancer, those lymph nodes are hard and stationary - they don't move very well because the cancer causes a fibrous mass in the node. Or something. He wasn't able to palpate it very well. Lymph nodes can become enlarged with any kind of infection. He agreed that generally nodes with cancer do not move, so the fact that it moves quite a bit is a good thing.

3) Would those lung spots cause the coughing that I've been experiencing since I found out about the lung spots? He said that those lung spots are "so small" that I wouldn't notice anything in terms of coughing or breathing. He asked if I experienced shortness of breath when exercising. I haven't really. His guess is that my coughing and slight wheezing that I have is related to allergens. The Willamette Valley is notorious this time of year for hayfever. Lots of pollen in the air. However, I still had this slight cough while in northern Norway, which was pre-pollen season there. On the other hand, I did eat a lot of processed sugar while in Norway which can cause some phlegm and a cough.

4) Where are the lung spots? My spots are nodules inside the lungs, not on the pleura. They were located at the outside of the major blood vessels, more on the periphery. The major blood vessels were well lit up and on the CT, I could see them get bigger and then smaller out at the ends of the vessels. These spots were located beyond the ends of the vessels, so they weren't blood.

5) What is the likely progression of disease? I said that it was in my breast, then in the skin and the bones. He stated that cancer like mine, which was spreading via the lymph and the blood, would be somewhat more likely to go to the pleura, and then it would be easy to go to the lungs. I also mentioned that it seemed strange that my cancer was in the right breast, but that the spots showed up on the left side. He nodded because it would seem logical that the cancer would go to the right lung first. However, he does know of examples where the cancer was in one breast and they didn't find cancer in the lymph nodes on the same side, but in the opposite side. He asked, "so why did it pass through all of these other places and then decide to stay there in the opposite side? We really don't know enough about the biology."

6) When would cancer go to the liver and the brain? He said that different varieties of cancer cells like to grow in certain environments. So, cancer that's in the blood and lymph is more likely to go to the lungs, but that the cells would have to "change their code" (which I assume meant genetic code) in order to want to invade the liver and the brain.

7) What else could cause the lung spots? He admitted that it could be a lot of things. He mentioned fungal infections and gave me several names of different diseases caused by fungi. One is histoplasmosis, which I've heard of before when I worked as an assistant for a retinal doctor. He said that people in certain regions, like the Ohio River Valley, have high rates of fungal infections, like 50%. These fungal infections can lodge in the lungs but people never have any symptoms, other than the nodules in their lungs. Lots of people in the Ohio River Valley (I think) have CT scans that look like mine.

8) Those spots weren't there in August 2008, and 8 months later, they are there and one is 1cm. My first cancer was 2cm and they said that it had been growing for 8-10 years and was "slow-growing". This cancer was "medium-growing", and while it was more aggressive than the first one, it wasn't the fastest growing tumor. So, how likely is it that a tumor would grow to 1cm after just eight months? He said it was certainly possible that it could grow that quickly, but when I said something about slow or medium-growing, he just shrugged his shoulders and said that there was much that they don't know about the biology of the disease.

And, finally, given all that we discussed, I asked 9) what is the likelihood that these spots on my lungs are cancer? His answer? A 60/40 chance. I asked, "do you mean a 60% chance that it is cancer?" and he said, "yes". I replied, "Well, with what you've told me, I think it's more likely to be 60/40 that it isn't. Even, 80/20 that it isn't cancer". He smiled, which implied that he liked my positive thinking.

He suggested that I start doing visualizations and visualize those spots shrinking. He doesn't want me to change my meds at this point - so I'm still taking Tykerb and nothing else. I'll have a CT scan in early July and then another appointment with him on July 9th. We'll see what happens then. Next week, I have another Zometa treatment and then will have my tumor markers measured.

So, the past few nights, I've been trying to start a visualization routine. I go through these relaxation breathing exercises and fall asleep before really starting to do that. I got a bit farther last night. I imagined every breath I took in as a cleansing breath. Sometimes, I held the breath and imagined the air as a kind of "roto-rooter" cleaning out anything bad, like a fungal infection or little tumors. Then, when I let out the breath, I let it all go. My goal is to take a lot of breaths like that everyday, imagining something similar. Sometimes, the "roto-rooter" was a cleansing light (which was something I read within the last week in one of my books).

I really would like to get hypnotized - two of the books I'm reading by Andrew Weil and Brian Weiss talk about hyponosis. Visualizations are easier under hypnosis . .. but how do I find a hypnotherapist that I can trust?

Well, that's something to work on. In the meantime, reading rough drafts of student papers (this class did a great job on Wednesday doing skits, where they pretended they were aliens observing American culture; they did a great job!) and making some final revisions to an article. I will also meet with my incoming Ph.D. student today. This week-end - finish the mosaic and more putzing around the house. I think we're going to have a garage sale next week-end.

How am I feeling? Happy and content. It's sunny outside. I'm getting my work done, both at home and at work. My son is in good spirits. My partner is having some issues with his daughter, so he's stressed about that, but he seems to be enjoying massage school. I have a job and the rhodies and roses and irises are blooming. What more can one ask for? (Well, other than being free of cancer!)

Conversation with my Colleague

As I posted a few days ago, I'm not entirely convinced that those lung spots on the CT are cancer. I chatted about it today with my colleague, who has a Ph.D. in genetics (I think) and whose brother is an MD (I think). S. has been my source for medical research reports - he'll read them and then explain the nitty gritty details for me. (S., I know you read the blog - please correct me!)

First, I asked S. about what he knew about the relationship between tumor markers and metastases, particularly in the lungs. I asked how likely it would be that I would continue to have low tumor markers and still have a metastases. In the end, from what I understand from him, it would be highly unlikely to have a lung metastases with my low tumor markers.

Second, I mentioned how unconcerned Dr. K seemed to be when we talked on the phone last week. He had the CT report for six days before calling me, which suggests that there was no urgency. He said that he just wanted to stay the course in case of my treatment regimen (Tykerb). If it grows in the next three months, then we consider Xeloda. But he said "if". He also told me to go ahead and keep with my long-term planning with work (i.e., years). He gave me the impression that he didn't expect the spots to grow at all. As I reflect back on the conversation, Dr. K seemed really unconcerned.

Third, I mentioned to my colleague that I had a 1cm spot and 2 4mm spots. Now, my first bout with cancer, I had a 2-2.5cm tumor that the doctors said had been growing for 8-10 years (slow-growing). This time, I had tendrils that extended out 5cm and then had spread to my skin and I had bb-sized ones in my bone marrow, which Dr. K estimated had been there for "months". This cancer was "medium growing". My point is that how did a 1cm lesion grow so quickly in 8 months? My cancer wasn't fast growing - those spots weren't on the CT scan in August. If my latest cancer was "medium growing", I just have this impression that it wouldn't be so big so quickly.

My colleague and I then talked about how perhaps I picked up some kind of infection that's affected my lungs while I was on the airplane to Norway, which would show up as spots on a CT scan. He also said that the spots could be caused by many different things.

Then, about 30 minutes later as I sat in my office preparing for class, S. came into my office and asked me if the CT scan found anything in the liver. When I replied that it didn't, he said that, in general, most breast cancers progress to the skin or the bones first, then the liver, then the lungs, then the spine, then the brain. It doesn't very often happen that it would go to the lungs before the liver. So, again, it's highly unlikely, since my liver is clear, that those spots are cancer on my lungs.

So, all in all, a good conversation about the likelihood that there is cancer in the lungs - not very likely at all. It made me feel better. I was feeling a bit down this morning as I walked to work - I didn't really want to be at work both because it was gorgeous out and because I'm burnt-out still from teaching; I got to thinking about how long it was going to seem before my next CT scan (and having to live with uncertainty); and I still had to grade some papers (the worst part of my job). It was a Monday, for sure. The conversation with S. perked me up. Thanks!

CT Scan News - A New Excuse to Say No at Work!

Dr. K finally called me late this evening. No news was not good news. It just wasn't urgent news.

Apparently, I have three little spots on my left lung. The spots on my bones are still there - they aren't bigger and also there was the same amount of spots. The little spots on my lungs are 1cm and two 4mm spots.

Crap. This means I start taking Tykerb again. We will do another CT scan in three months, if the spots have grown then we bring Xeloda back into the mix.

F&*K. I was not expecting that news.

Dr. K did say that while we haven't stopped the disease, we have slowed it down quite a bit. He really didn't expect me to be doing as well as I am. He told me that I look healthy. I am mentally healthy. He also said that I should continue living my life as I have, making plans to serve on Arctic research committees if I want to, traveling, etc.

There is a chance that these spots were caused by some infection - that they are scars. He said that sometimes, after pneumonia or bronchitis, spots like these show up on CT scans. However, my last CT scan 8 months ago did not show these spots. He double-checked. So, we suspect cancer.

This is when you start second-guessing all of your decisions - like going off of Xeloda in December and trying this little experiment to not take Tykerb. But like I told Scott just now, I can't sit around regretting those decisions. I made the best one I could make - I made the one that was right for me. Dr. K sorta expects that the next CT scan will show these three spots with no changes. They could be that way for years.

So, I start Tykerb again tomorrow. I will also contact Brodie and see if Chinese Medicine might have something to add to the mix.

I don't want to teach tomorrow. I sorta feel like crawling into a hole. It's gonna be hard to act like everything's normal when it isn't.

Update (10 minutes later!) - I just added the subtitle "A New Excuse to Say No at Work" - I'm trying to regain my sense of humor and equilibrium. Bear with me, please!

Well, shit anyway.

No News is Good News?

I called Dr. K's office again today to get the results of last week's CT scan. His secretary told me that she'd left the note for him yesterday. I asked whether or not his nurse (or someone else) could give me the report. His secretary, D., found my chart - it was on his "to do" pile, which means that he is the one who wants to do the calling and won't leave it to his nurse or secretary. So, I must wait. D., though, did say that if they found something to be concerned about, he'd HAVE to call me, so the fact that he hasn't called yet is a good thing.

Dr. K's last day in the office is tomorrow - then I think he's off to the Philippines to treat patients in a prison there. When he told me where he was going, he gave me this little look of worry, a sort of "what did I get myself into?". I told him that he should go to YouTube and watch these Philippine prison inmates do Thriller by Michael Jackson. I figured if these prison inmates are dancing, they can't be all that bad, right?

I found that video after watching another video by these Australian aboriginal youths, who danced to Zorba the Greek. They became a kind of overnight sensation last year - one of the listserves I read sent the link. I loved that video, too. Hope you enjoy!

Tumor Markers!

Hello,
A quick message - I need to get to bed. I'm tired after an active week-end in Seaside with my son.

I found out on Friday morning that my tumor markers are as follows:

CA15-3 - 19.6
CEA - 1.6

So, continued good news, huh?

Here's the history:

Sept 2007 - 23 U/mL
Jan 2008 - 31 U/mL
Mar 2008 - 36 U/mL
June 2008 - 23 U/mL (started radiation that month)
Aug 2008 - 18 U/mL (week of August 4th)
Sept 2008 - 14.5 U/mL YAAAAAAY!!!
Oct 1 2008 - 19.6 U/mL
Oct 31 2008 - 15.3 U/mL
Nov 28 2008 - 19.5 U/mL
Dec 30 2008 - 16.0 U/mL
Jan 22 2009 - 15.4 U/mL
Mar 2 2009 - 17.8 U/mL
Apr 8 2009 - 19.6 U/mL

Remember that anything below 33 is considered normal.

Here's the history for the CEA:

1/2008 - 1.2 ng/mL
3/2008 - 0.9 ng/mL
6/2008 - 1.0 ng/mL
8/2008 - 1.1 ng/mL (need to double check this number, but it was in that 0.9 to 1.2 range)
9/2008 - 0.5 ng/mL
10/2008 - 0.9 ng/mL
10/31/2008 - 1.2 ng/mL
11/28/2008 - 1.2 ng/mL
12/30/2008 - 1.1 ng/mL
3/2/2009 - 1.4 ng/mL
4/8/2009 - 1.6 ng/mL

For the CEA, anything below 3.8 is considered normal!

Yippee skippy!

I still haven't heard from my doctor's office about the CT scan. Considering that it was last Tuesday and Dr. K didn't call me right away, even after I called on Thursday, probably means that all is well. Have a great Monday!

Volleyball

I'm going to talk to my plastic surgeon today .. . I ended up playing volleyball last night without checking with him first. Our team didn't have enough players, so I decided to play. I thought that I know, more or less, what I can and can't do, and I also knew that the spring league is more for fun and exercise than anything else, so if I didn't over extend myself (literally), I'd be okay. So, I didn't hustle for any balls, but if they were near me, I'd bump them. Last night, after I got home, I could feel my abdomen tighten up a bit, but it's fine this morning. It was fun to get back on the court. It is 8 1/2 weeks post-surgery now.

But now I'm really hungry! I have to fast (no drinking water, either) for four hours before my CT scan today - which is at 10am. This is the hardest part for me. I usually wake up hungry and thirsty and not being able to eat or drink is tough, not to mention the lack of caffeine.

Two hours and 52 minutes and counting.

Visit with My Doc

I had a check-up with my oncologist today, Dr. K. It went pretty well. I told him about my trip last week to Norway. There's something I haven't shared with my readers yet because this opportunity that was discussed while in Norway is only an idea right now and may not go anywhere, but the fact that the idea was discussed is very exciting and I shared it with him. He could tell that I was pleased and his reply was something like, "it's heartwarming to hear something good after all the bad news that you get when you have cancer".

I asked him about whether or not it's unusual for someone to have low tumor markers like this for as many months as I have. The quick answer is that every case of cancer is different, so it's hard to make any generalizations. However, he did say that lobular cancers, which was what my first cancer was and it's assumed that my second bout was the same kind of cancer (although I'm not sure that was ever verified) tend to be more unpredictable. Lobular cancers also tend to be estrogen-positive and they also tend to metastasize to the skin and the bone. So, in that sense, my cancer is acting predictable. He feels, though, that since I'm doing well, I should just continue doing what I'm doing in terms of taking the Tykerb (err, um, sure) and getting the Zometa injections (they keep my bones strong).

I then asked him if there would ever be a day when I don't have to take any of these drugs and his reply was that I probably would have to continue taking drugs for the rest of my life. There are several new ones coming out, but since I'm doing well on Tykerb (ahem) at the moment, there's no need to switch up anything with my treatment.

I then told him about my theory about sleep. I said that Tykerb does interrupt my sleep - I don't fall into a deep sleep, which is needed for good immune system function. When I don't take Tykerb, I sleep much better (I still woke up a couple of times in the night while I was off the Tykerb). So, my immune system is not able to fight off cancer because I'm not sleeping well, which then creates the need for me to continue taking Tykerb. He seemed intrigued with that idea and said he'd file the information away for a few more months. I think we may reconsider things in August, when I've had a full year with the low tumor markers.

In the meantime, I will have a CT scan soon just to see how things are going and I will see him again in two months. I also have my next zometa treatment next week and will have my tumor markers measured again.

It's still my goal to be NED (no evidence of disease). And, then I plan not to ever deal with this disease in my body for the rest of my life. I'm making as many changes as I can to make sure of that!

All I want for Christmas is My Two Front . . .

Boobs!

What does this mean, you ask? Well, good news from my oncologist, Dr. K.: there is nothing going on with the rib bone. He said the radiologist said that the bone looked okay. Cool.

I then asked if he'd talked to Dr. H, the plastic surgeon, about the timing for reconstruction. He said they had talked and Dr. H was inclined to wait until spring break in March in order to give the wound more time to heal. But then I told Dr. K that the International Arctic Science Committee asked me to co-chair a session related to Indigenous Cultures - Past to Future for the Arctic Science Summit Week in Bergen, Norway over spring break. I'd like to go to that so March would be out and my chair would prefer that I try to schedule a surgery around winter term teaching, which means scheduling it for maybe the second week of December. Dr. K was fine with that and he said I'd just have to convince Dr. H that that was okay.

So, yep, it looks like I might be getting what I want for Christmas!!