Fiber Folly and other Obsessions

finished!

OK I finished last Wednesday! They gave me a certificate, flowers, and a keychain, and I gave them chocolate and a card. Larry had brought the chocolate from Belgium! The last 5 sessions were the "boost" and now I have a big red area where that was - in the "tumor bed". Under my arm was very burned and sore, and peeled leaving big wounds, but I used Silvadene (prescription) and today it seems that it has pretty much healed, although it is still somewhat red, and still peeling (but not leaving raw skin). The boost area may peel eventually, but may take another week or so, we will see.

I am very glad that it's over, although they were super nice to me, and very upbeat through the whole thing. The burns over the last couple week were a downer, and I caught a 2nd cold (even though the immune system is not supposed to be affected!), and in general I was a little draggy. But I do feel better now (cold gone, and a week after the radiation). Today I went back to see Jesse after 2 weeks and he definitely put me through my paces.

I am also looking forward to getting back to swimming - I may wait a few more days to let the skin be good and healed, but it will be great to get back in the pool.

I went to see Dr. Morkas, oncologist, last week, and he put me on Arimidex, after going through the list of potential side effects: endometrial cancer, joint pain, muscle pain, osteoporosis, blood clots! So they will be watching my bone density, and if I have any bleeding, I need to be checked out for endometrial cancer right away. The joint pain affects 30% of the patients, but can be alleviated with vitamin D (they will be checking my vitamin D levels), and possibly anti-inflammatories, etc. That is the one that really concerns me, so we shall see if I develop it. So far so good (5 days of Arimidex so far). As of a year ago, my bones were quite good, CONCRETE as we say, so hopefully bone loss won't be a big issue either.

one week left...

So it's 5 1/2 weeks down - there have been some changes in the last week. The whole radiated area has gotten very red and blotchy, and in particular the area under my armpit is feeling burned and sensitive. Some of the skin has started peeling. Still applying the creams 3-4 times a day! But tomorrow they start the "boost" which will focus the radiation on the area where the lesions were found, and let the rest of the breast alone. So hopefully the burned area will be able to start healing. So I have 5 "boost" treatments and then I'm done - Wednesday of next week will be my last day! I am going to gather up cards and some chocolate for everybody there to thank them for taking such good care of me and making the experience as pleasant as it was.

Next week I go back to see the oncologist, and he will want to start me on Arimidex. So that phase will be starting...

5 weeks radiation done, doing pretty fine

So tomorrow is the end of 5 weeks radiation - the skin is reddish but not irritated at all (thank you, Miaderm!). I had kind of a slump this past weekend - didn't exercise and had a headache all weekend, but then that resolved and I'm back to exercising. I don't know if I was just being lazy or if I was really affected by the radiation. 

The radiated breast was feeling heavy and kind of sore - not a big deal, but noticeable. I saw Dr. Z (surgeon) a few days ago and she said there can be fluid buildup, and that if it is still an issue after radiation she can aspirate it out in a simple procedure. So I check in with her after radiation is done. (The fill-in dr at Sightline said it was a skin issue, which clearly it wasn't! Mildly concerning.)

Actually, in the last few days it is feeling much more normal, and if I had any fatigue, it seems to be gone now. I saw Dr. Mehta this morning and he said actually the symptoms can be the worst about 2/3 of the way through, and then they get better towards the end, so that might be what's happening!

I finished my bee shawl, and now I'm doing swatches and reports for the TKGA Master Knitting Level I - making good progress on those, although I am having to do a lot of re-knitting.

3 weeks radiation done

Well, 3 weeks radiation done... skin is still ok, not feeling fatigued. I am feeling perhaps some funny sensations bruising? could be from my workouts too, but it's only on the left side. I think I might be a little more tired than usual after working out, say, but that's about it. 

Sightline and I are having a disagreement about what I owe - they think I owe $35 per treatment, but I reached my out of pocket maximum some time ago, and apparently they haven't looked at the insurance statements! Blah.

Not too much else to report - still knitting, thinking about getting started again on the dissertation, taking my Latin class on love elegy, and keeping up with the workouts pretty well. I did have a cold there for a week or so which slowed me down, but that's over with!

2 weeks radiation down, 4.5 to go

Not too much to report - the radiation is going fine. They have taken additional x-rays to verify that everything is still in the same place and that they don't need to change the program. I have not gotten any skin sensitivity from the radiation, but they recommended starting with the creams - the one they gave me was kind of thick, so I found this other one on the internet, Miaderm, ordered it, and it's a nice cream, and hopefully will keep my skin from getting too messed up. 

Last week was spring break, so it was nice not having to go to class, and I mostly worked on my shawl. Exercised. Not quite done with the shawl, but should finish it this week.

I was a bit tired mid-week and thought it might be fatigue from the radiation, but no, it's a plain vanilla COLD. So now I have a full-blown cold with sniffles and congestion. Hopefully the worst will be over pretty soon.

My brother was in town this week for a few days, and it was great visiting with him and my Dad.

More later!

first week of radiation DONE - 5 1/2 more to go

So now I am a radiation veteran! 8:30 am every weekday morning. It is about a 10 mile drive to get there, and most days it only takes 15-20 min on the freeway, but some days there is a traffic pileup, so that is variable. I usually leave at the last possible moment, and I was late a few times. But they seem to be quite flexible with the time.

It is a big robotic contraption, and they place me precisely on the table, lining up the tattoos and the sticky patches properly, and then the radiation itself takes maybe 2-3 minutes. 

Anyway, I do think I have noticed some itchy tender skin, so they have given me a cream for that - nothing particularly special about it, I don't think, but it should help. 

The incisions are much much better, almost unnoticeable, although there still is some tenderness under the arm, and the upper arm is still numb and irritable, but much much better than before - it will probably take at least another few weeks to completely resolve. Progress everyday but still taking a while. 

I saw Dr. Morkas, the oncologist this week. I thought it was almost a formality, since I knew I didn't need chemo, and I was pretty sure he wouldn't prescribe Arimidex until after the radiation. I asked Dr Z's office TWICE to make sure to fax him the records from the surgery - once when I was there for the wound check, and later, when I made the appointment and they said they had no records, I called and asked them again! Imagine my surprise when I got in to see Dr. Morkas (he kept me waiting about an hour!) and he said he had no records, and had to ask me for an update! I was really embarrassed, but anyway. Based on what I had to tell him, he agreed no chemo, and the Arimidex would come after radiation. Instead of calling Dr Z's office and asking them a 3rd time for the records, I dropped off copies of my copies the next day. I will see him again after radiation is over. I do have a few question that either he or Dr. Z can answer - like what about that big area that lit up on the PEM but wasn't mentioned in the pathology, what the heck was that?

Had lunch with a friend this week who has also been diagnosed recently with DCIS but is still in the mode of tests and scans to prepare for surgery, so still no firm diagnosis and all uncertainty and angst that entails! Ah yes, I remember those days!

I feel so fortunate to have such a minor diagnosis, even though it is cancer. However some people are still treating me like a cancer patient! I remember not really being quite aware of the differences between cancer diagnoses - I mean cancer is cancer, and it would always be dangerous. But my cancer is a whole different ballgame from Elizabeth Edwards-type cancer - a whole different disease. And that kind of cancer is what you think of. Anyway - knock wood.

Having a wonderful time knitting the Bee Fields Shawl, from Anne Hanson of Knitspot - I have had the yarn and pattern for over 3 years, and it was on my list to get DONE this year, and it is such a cool pattern! Very well thought out and very interesting to do. I have been feeling guilty about an Estonian shawl I started also probably 3 years ago - which I never finished - and it is beautiful, but the pattern is not so rhythmic, and the border does not fit well onto the body of the shawl. So I am thinking maybe there is a legitimate reason not to finish the Estonian shawl. But then again I don't have so much further to go... I am planning at some point to set aside a day or two to finish all these projects that are on the verge on completion and get them out of my queue.

first radiation down

So last week, Friday, I had to go to Sightline for "x-rays" and that turned out to be basically a test, I guess, of the program of radiation they had calculated - to make sure all the beams hit me where they were supposed to. So I had to get in the radiation bed, and they verified everything, and oh yes, there were x-rays. 

Today (Monday) I went in for my first treatment, and the doctor (Mehta) was supposed to have checked the films, but apparently he hadn't, so they couldn't take me in until he had checked them -- which apparently he could do from wherever he was, online, but I had to wait probably a good hour before he did that. The zapping itself probably took about five minutes. It is all very high-tech - lots of computer monitors and the machines are computer-controlled. 

I also briefly saw the doctor they have hired to replace Dr. Oh - I guess I see the dr weekly for a weight check, BP, etc. to make sure my body is coping OK with the treatment. 

After the treatment, I went to the Y and did 30 min on the treadmill, and then this evening I went to a mixed martial arts class - just wanting to try something new, shake up the system. Lots of boxing! We'll see what is sore tomorrow.

ready for radiation

Well my incisions are much better. My upper arm is still numb and irritated, and there is still swelling under my arm, but it is much better. 

I went in yesterday (Tuesday) for my radiation "simulation" in which they fashion a pillow to your shape, so you will lie on the pillow in the same position every time, and they marked me all up with a sharpie pen, stickers and two tattoo points - all to make sure they position the beams exactly right every time. Also they did a CAT scan of my torso, which they then feed into their computer programs to determine the dose and angles of the beams, to make sure they cover the whole breast, but don't touch anything else but the breast. (Actually the doc told me that it was inevitable that the radiation would wing my lung a tiny bit but it shouldn't have any consequences.) 

It turns out that Dr. Oh is "no longer with them" WAAAH - and Dr. Mehta is the doctor I will be dealing with, at least I guess until they replace Dr. Oh - Dr. Mehta is the Medical Director of Sightline and usually works at the branch in the medical center.

AND they called back today (Wednesday) and they are ready to start the radiation but I need to have x-rays first? don't know what that's about. So I am going in for the x-rays on Friday, and then I start the radiation Monday. I have a standing appointment for 8:30 for the radiation on weekdays now.

With the sharpie pen marks and the stickers, I said, so I guess swimming is not a good idea? they had said showering would be fine, but I should ask the doc about swimming - and then I forgot to ask! I have been riding my bike pretty much daily, and I am starting back up with Jesse this Friday. I rode 35 miles in an organized ride last Saturday (Bulldog Ride for Waller Jr High), and then 25 miles with the Blue Line Bike Lab team on Sunday, combined with bike safety class.

This weekend I'm going to try to ride 50+ miles at the Gator Ride in Baytown, benefiting the YMCA there. 

I am doing the MS150 in April, and I just realized that it will be a the end of my course of radiation, and it is POSSIBLE that I will be too tired by then to do the ride... I hope not! They are saying that you might feel fatigue near the end, and the skin might even be blistered by then... so we shall see! I want to do the ride, especially since I found out that you don't have to go 100 miles he first day anymore - there are 75 mile starts, and 50 mile starts! So that will help a lot, because 100 miles in one day has always been a LONG ride. 75 miles is completely do-able, IMHO.

pathology in - looks good

I finally got the pathology yesterday, Wednesday. Dr. Z did not call with the news last week (sec'y told me results hadn't come), and this week she was out. I had an appt with her partner for a wound check Tuesday, which they cancelled and rescheduled at last minute because he was tied up in surgery - for Wed. So I go in yesterday - and this doctor is cute as a button, by the way. Basically, nothing in the lymph nodes, one approx 4 mm area of DCIS immediately adjacent to where the other speck was removed previously, and also attached to a papilloma! 

So there was a papilloma in there that may have been causing the original bleeding, but it hadn't recurred after January surgery. I don't understand why the DCIS was associated with the papilloma, or why it didn't all come out when she removed the duct last month (questions that occur to me on reading the report at leisure). Also what about that 3.5 cm area of "activity" that showed up on the PEM - presumably she took all that tissue out but there was nothing of interest in there to the pathologist.

So this is all good news. In the meantime I've had quite a large chunk of my left breast removed (partial mastectomy, surgical report said!), and a lymph node or 2 removed (I think the report said 3). The breast incision is quite long, but it actually is not bothering me much. The incision and area where she took out the lymph node is a bit bothersome - there is swelling, I guess fluid build up, where the lymph node was removed - like someone stuck a roll of quarters under my skin. And the nerves were cut, so there are nervy irritating feelings under my arm and down my arm. So I guess that will take some weeks or months to resolve completely. I have been sitting around with cold packs under my arm when I can and that does seem to reduce the swelling and make it feel better.

I asked him about exercise = I guess swimming is out until the wound heals more (don't want the incisions to soak in water), but other exercise is ok, although his first reaction was "no". But eventually he said I probably wouldn't hurt myself, but it might not be a good idea to go jogging or lift heavy weights - too much bouncing and pulling on the incisions. I told him I was already riding my bike and not having problems with that. So I guess I'll wait a little while to do anything more than that. 

Not much more to report - I have an appointment on Tuesday for my "simulation" so they can take all the measurements and get set up for the radiation therapy.

still no pathology from surgery on monday...

Well here I am 4 days post-surgery, and I am itchy and a little sore, but feeling better every day. My throat was sore for a few days because they intubated me for the surgery (had not done that last month), so had to get over that. 

Wednesday (2 days post) I rode my motorcycle to UH and walked with my backpack for about a mile on campus - it didn't bother the incision under my arm, but actually the bouncing with the walking did bother me a little.

Today (Friday) I thought I could handle a bike ride, which went fine! Didn't bother anything - of course all I'm doing is leaning on the arm, rather than actually using it for much. 

My range of motion is fine with the arm, although they say you might be stiff and sore for quite a while. Doesn't seem like it will be a problem, but I'm going to wait until next week probably before getting back with my personal trainer!

So no results yet - just hoping that I don't need any more surgery, and that I won't need chemo! Dr Z will be out next week but I have an appointment with her partner Tuesday for a wound follow up, and I assume I will get the results no later than that appointment.