Portacath gone

Dr. Sonfield removed the portacath this morning, right there in his office. Shelby went with me to drive just in case I didn’t feel well enough afterward. Actually, I felt fine throughout and still do.

He just gave me a little shot of anesthetic, meticulously opened the same incision, then gently and slowly tugged the portacath out of my shoulder. I couldn’t feel it and kept my eyes closed, but he and Shelby and I chatted about babies the whole time which made it easier – I didn’t have to think about what he was doing.(He has twin boys, and Shelby and I told him about Madalyn.)

A few internal stitches plus a few external stitches, a neat bandage, some tape, and all was finished. I’ll go back to get the sutures out in a week.

That little gadget was very helpful for chemotherapy. Since I have such small veins, even the best lab techs have trouble drawing blood or inserting a line.

I’m doing quite well otherwise, except that my thyroid levels are a bit out of whack and I may need thyroid medication in the future. Apparently chemotherapy damages the thyroid gland in many patients. Just one more side effect!

All in all I’m feeling better every week, less and less fatigue, more and more energy. That’s a good thing since I went back to playing the piano for church. Three or four hours of rehearsal time a week, plus playing for the actual services, requires some extra rest the following days but nothing major.

My hair is getting back to normal too. It’s still really short but that’s okay with me. I’ve had one trim so far to even out the shaggy look and will need another one in a couple more weeks. But the mix of light and dark gray with a little white around the edges is pretty much the same as before.

I’m so very grateful for all the prayers and thoughts from Christian friends and family around the country. I may not post much to this Journal these days but have gone back to writing some in my other blogs, even added a chapter to The Simsville Inheritance (novel posted on my main website, www.BetteCox.com).

John 10:10! A verse still very dear to my heart.

Activity level much improved

Great-granddaughter Madalyn Grace Powell arrived 1-12-12! She weighed 7 lbs. 11 oz. and was 20-1/2 inches long. Just had to post some pictures here. Mother Brandi, baby Madalyn and dad Jonathan all doing well.

Since the last post before Christmas, I’ve seen Dr. Burnett (family doctor) and Dr. Denton (orthopedist). I discussed the bone density test results with Dr. Burnett who decided against my taking Fosamax. She says it has never been proven effective and risks outweigh any benefits. She did order a Vitamin D blood level, which was low. So I’m taking prescription Vitamin D once a week for several months. No side effects from that, thankfully, and it’s fairly inexpensive. My blood pressure had gradually increased to what it was a year ago so I’m back to taking both BP medications I used to take.

I saw Dr. Denton for a FU on the torn shoulder bursa. It’s a tiny bit sore still but much improved and he said I don’t need a repeat Cortisone shot.

I asked him about the one spot on my upper chest that still hurts. Right between the clavicle and the upper ribs, it’s not constant but feels like a small hot poker sticking in my muscles, followed by soreness. It’s not like the shingles pain so I don’t think it’s in the nerves, perhaps in a rib or chest wall muscles.

He took another careful look at the shoulder MRI and x-rays (all conveniently stored on his computer system) which included shoulder, clavicle and upper ribs. No fractures, no cracks, nothing abnormal at all showed up.

His thought was that the mastectomy with underarm lymph node removal, shoulder bursa injury exacerbated by radiation therapy positioning, radiation burns with skin blistering, all combined to create a pocket of inflammation in that area. He recommended using Voltaren gel (antiinflammatory) on the area to quiet down any inflammation. I finally got the prescription filled and used it for the first time last night. It smells really nice, sort of flowery. Just have to wait and see how well it works.

Otherwise I’m feeling better and better, able to do more every week. In fact, I’m back to playing piano for church worship services. I played Sunday’s service including special music and did okay, just needed a little nap after lunch. Matt even announced to the congregation that I had been absent from church due to health problems but that I was now healed and able to use my gifts in music again. I didn’t know he was going to do that but it was okay.

So all in all I’m doing well. The arm lymphedema can be addressed at my next FU with Dr. Sonfield, may need to return to therapy for that. I’m in no hurry.

Praise God for his wonderful words and his wonderful people! I’m very thankful for the prayers!

Opinions, opinions… and decisions

I saw Dr. Sonfield last week and told him I’d stopped radiation therapy. He said he thought it was perfectly reasonable that I had stopped. He’d actually seen my radiation burns while they were pretty bad. He commented that there’s no accurate way to tell whether the additional few treatments would have added much more benefit and not to worry about it.

He’s giving me a couple more months to heal up before removing the porta-cath, which was fine with me! He also didn’t want to drain the seroma again, saying it was stable and would gradually resolve on its own. I did remember to tell him about the torn bursa in my shoulder so he could add that to my medical records. (It’s feeling very well these days.)

Friday I saw Dr. Bajaj who didn’t comment much about my stopping radiation. He outlined pros and cons of my taking hormone therapy (Femara) for the next 5 years. On the pathology report after surgery, the sensitivity of the cancer cells (in the excised lymph nodes) to hormone therapy was 2, the very bottom of the range just over the none level. The pathology report from the needle biopsy had showed no sensitivity at all.

Considering this, the likelihood of the hormone therapy actually offering me any benefit in preventing recurrence is questionable. Dr. Bajaj recommended I do it anyway, saying the possibility of benefit is better than no possibility. I said okay.

He then ordered a bone density study, done immediately down the hall at Carolina Health Care. The reason for this test was that Femara lessens bone density and thus that will need to be monitored regularly. The test showed osteopenia bordering on osteoporosis. That’s not a new finding, basically the same as 5-6 years ago.

Since Femara would make it even worse, Dr. Bajaj said I needed to talk to my family doctor (Dr. Burnett) about starting Fosamax. I will be seeing her next week and will ask her about that.

I don’t know why I was surprised, but even the generic Femara was extremely expensive – $400 for 30 pills. My Medicare drug insurance paid $340, leaving me $60 to pay. Next month the deductible will be in force again, however, so the refill would no doubt cost me the entire $400. I simply can’t afford that, especially considering its questionable benefit to me in the first place.

After coming home from the drug store I went online to do some research about this medication, which I should have done beforehand. Decreased bone density is not the only bad side effect, by any means. They are about the same as for the chemotherapy drugs I took. I wish I had not gotten the prescription filled.

Dr. Bajaj’s office does blood work every visit, and this month my numbers were worse than last time. Radiation therapy had lowered WBC, platelet count and other things, just as chemotherapy had done. RBC’s are back to normal though and I have less overall fatigue and more energy. I’ll be glad when all this returns to normal.

As far as the radiation burns – the redness is nearly gone and the peeling stopped. The one spot that was so bad still burns and itches like crazy. I just slather anti-itch cream on it a couple of times a day to prevent myself from scratching. My hair is growing and I finally gave up wearing the little hat.

All in all things are looking much better and I feel much better. Christmas is almost here and I look forward to spending time with my family. I so appreciate all the prayers of faith and thankfulness my friends and family have offered for me this year – please don’t stop now!

Stopping radiation therapy altogether

I returned to radiation oncology today for another skin check and to discuss things with the radiologist. The burns on my upper left chest don’t look or feel much better to me. The top layer of skin is constantly peeling in that one area, all of the radiated skin is still quite red and painful, and now has developed purplish areas that look something like bruises.

One Lortab no longer helps much with the pain and I can’t use the Prutect cream on that peeling area, it won’t absorb. I use some prescription antibiotic ointment that I already had on the worst spots. I’m still taking Cipro for the skin infection and have another day or so to go on that. The chills and fever have stopped but the weak, shaky feeling and elevated blood pressure continue.

Today I saw Dr. Spence. He looked at the red peely skin, said he thought it was better and advised me to resume radiation today. Last Thursday Dr. Grubb said I only had 3 more full treatments to go, then 6 booster treatments after that. However, Dr. Spence said there were actually 5 more full treatments to go, meaning radiation to the entire field, plus 4 booster treatments.

He showed me the area he meant by entire field, which includes all the painful peeling skin. The booster treatments would be only to the surgical scar under my arm and across my left chest wall, plus a little above and beneath the scar. That is a long scar but it would avoid the peeling area.

I thought about what he said and asked if I could wait another few days before resuming. He said no. He said every extra day off made the overall protocol less effective and I’d had a long break already.

I told him that my shoulder was still very sore from the torn bursa and that the burned peeling area on my chest wall did not stretch much right now. Raising the left arm over my head would be really difficult and painful and I’d prefer that area to heal a few more days before re-starting radiation.

But Dr. Spence wouldn’t agree to waiting a few more days. He told me that he’d had hip surgery in the past and had to force himself to do movements that were painful but were best for him, and that’s what I needed to do – stretch, stretch and stretch, pain or no pain. I needed to resume therapy now so it could be completed by Christmas, and wouldn’t that be a great Christmas present to myself.

He pointed out that the area that had been operated on now had scar tissue under the sore skin and radiation always made that worse, but that working it (exercising) would improve it over time.

He stressed that the protocol they used (total number of treatments) was designed to provide the best chance of preventing a recurrence and stopping now would not be in my best interest, but that he couldn’t force me to finish the treatments. I could do whatever I wanted to do.

I told him I understood everything he was saying (and I did), but that if I had to resume today then I wasn’t going to continue at all. He said okay then, that he’d like me to come back in a month for a checkup. I agreed and they made me an appointment for January 9th.

As I was leaving, the clerk said I needed to re-register (good for the next 3 months)- which I thought was pretty funny since I was discontinuing treatment – but I went ahead and did it.

So, whatever radiation is still working in my body will have to be enough. The effect is cumulative and that’s one reason the painful red and peeling area has continued to worsen for the last number of days. Hopefully the healing process will speed up soon.

I see Dr. Sonfield and Dr. Bajaj both next week for follow-ups. Last week Dr. Sonfield seemed to think it would be fine for me to stop radiation at this point – we’ll see what Dr. Bajaj has to say. He had planned to start hormone therapy after radiation was complete (pills, not IV).

Still on hold; feeling “crispy”

If anything, the skin redness has worsened. Now there are little black specks mixed in with some of the white peeling places. While the redness extends under my arm and all the way to my waist, the worst and most painful burning is in a semi-circular area where the peeling keeps recurring, on the upper left chest wall below the clavicle.

Dr. Grubb looked at it Thursday and said, no therapy yet, keep taking Cipro, use the prescription cream and return Monday for another check.

The burn doesn’t look much improved to me, though. The cream doesn’t absorb at all into the bad spot, it just lays atop the skin. Washing it off before applying more is a lengthy and painful process.

November 23rd was my last radiation treatment so it’s now been 10 days. I take one Lortab plus one Tylenol in order to keep the pain down enough to function. I can’t take more than that and still drive, which I have to do on a regular basis.

I got my eyes checked yesterday and a prescription for new tri-focal lenses. Dr. Zakhour says the new lenses will only be good for a few months, however, that I will need cataract surgery soon – 6 months to a year. He said I could have it done now but I told him I wanted to take a little break from doctors, hospitals and surgery first. He said he certainly understood and just to let him know when I was ready. One more thing to think about.

I am praying specifically and speaking to my skin that the radiation burns will resolve faster, the skin and muscles completely heal and be pain-free, and that if I have to stop radiation therapy altogether it will still have done a thorough job. John 10:10!

Radiation therapy on hold, again

Taking the break since last Wednesday has not really helped the red, itchy and peely skin on my chest wall. It is actually deeper red and more painful, feeling not just sun-burn tender but sore all the way through the chest muscles.

When I returned to Radiation Oncology today, I asked for the radiologist to check on it before any treatment. Dr. Spence took one look, said I needed an antibiotic and not to return for radiation again until Thursday. He’ll look at it again then and decide if the skin is healed enough to continue.

Since this will be my third break in the treatments, I asked him what effect taking these breaks would have on the efficacy of radiation therapy. He said very little if any, but discontinuing radiation altogether at this point would have a negative effect. Thus we needed to do whatever we could to keep the skin healthy enough to finish the treatments, taking whatever breaks we need to take.

There are nine sessions to go but only the next three are full treatments, the last six are “booster” doses administered only to the scar itself.

Please pray with me that the antibiotic will have good results and that I can get through the rest of the sessions without so much trouble! Thanks.

Shoulder update

I saw orthopedist Dr. Patrick Denton yesterday afternoon. He looked at the MRI images and said I have bursitis, caused by a small partial thickness tear between the shoulder bursa and one of the tendons. He said it probably did happen during surgery, that he sees two or three cases a year like that. The stretched-out arm positioning used during radiation has kept it stirred up, otherwise it probably wouldn’t have been such a problem.

He gave me a Cortisone shot and said that will help me get through the remaining radiation therapy sessions and afterwards the shoulder should heal up on its own. I already take a daily nonsteroidal medication for longstanding fibromyalgia so he didn’t give me anything else to take. He did remind me to keep the shoulder mobile so it doesn’t get frozen.

I returned yesterday morning to radiation. First I saw Dr. Grubb who examined the red peely area and pronounced it improved enough to resume radiation. After today’s session there are 10 more treatments to go, if I’m counting right. We’ll have a 4-day break this week for Thanksgiving which should help the shoulder and the burn to recover a little more.

Thanks for praying for these glitches – I truly appreciate every prayer!

Radiation therapy stopped until Monday

Because of skin redness and peeling, the techs asked Dr. Spence (radiologist) to take a look after yesterday’s treatment. He did and said I could have a break until next Monday. He also said that because my skin was still dry, taking a break now should keep it from blistering.

This morning my pajamas were covered with little skin flakes, sort of like skin dandruff! It’s tender and itchy but so far I’ve resisted scratching.

Although I sure would like to finish the treatments soon, I don’t mind taking a few days break. It will give my shoulder a break too. The orthopedist appointment is next Monday, before my radiation session.

MRI shows bursa tear, more prayer needed

Dr. Grubb looked at my shoulder MRI and found a small tear in the bursa. His office is making me an appointment to see the shoulder specialist at Pee Dee Orthopedics. They will let me know later today when the appointment is.

I have been complaining of this pain ever since surgery in August, saying it was getting worse and especially so since radiation therapy began. Until Dr. Grubb took me seriously and ordered the MRI, neither Dr. Sonfield or Dr. Bajaj suggested doing anything about it – not x-rays, MRI, nothing. Disappointing, to say the least.

Apparently these tears do not improve with time, they worsen – and especially worsen with certain positioning such as that used during radiation therapy. So what will the orthopedist suggest, I wonder?

My pink skin is now red on the upper chest wall and broken out in a small radiation rash. It is tender and itchy but not terribly bad. The prescription cream definitely does help. I bought some Lidocaine ointment Saturday to slather on one particular itchy spot and it seems to help keep me from scratching that itch.

So, I would appreciate specific prayer for a solution to all these glitches!

Several glitches need prayer

(1) Fluid re-buildup in my chest could complicate radiation therapy. Following therapy Monday I saw Dr. Grubb (weekly checkup). He ordered a CT scan to be done before I left the building. I had to wait about an hour to be worked in. After looking at the images Dr. Grubb decided that nothing needs to be changed for now (angle, strength of beam, etc.) but he’ll keep an eye on it. Dr. Sonfield may need to drain it again before my scheduled FU on the 30th. Wish this would taper off and stop.

(2) Shoulder pain has steadily gotten worse. Positioning the arm over my head for therapy gets more painful every time and Tylenol doesn’t help much. Since I still have to drive a good bit I can’t take anything stronger than Tylenol most days. Dr. Grubb ordered an MRI of the shoulder for today to rule out structural damage before recommending referral to an orthopedist, Cortisone shot, etc.

(3) Arm swelling is back somewhat. I’ve stopped wrapping the arm at night and wearing the sleeve during the day since that worsened the chest fluid buildup problem. This is a catch-22. I do the home massages to reduce the arm swelling now and then but can’t do it too much or it will interfere with the radiation protocol. After radiation therapy is finished I can resume sleeve / wrapping, but the fluid build-up problem may be a chronic situation.

I’d appreciate prayer for all these little glitches! Many thanks.