Clergygirl Itches, Fights Temporary Insanity

Thanks all who were praying today. I’m doing well. Digger indentation is gone and overall I can see a positive difference. The only hang-up I’ve had is itching. Once again I had an allergic reaction to the anesthesia and as I came out of my groggy slumber it became uncontrollable. The nurse and doctor tried to do as much as they could and were very patient and good to me. I don’t know if you’ve ever experienced itching to that extent….all over your body…but let me tell you….the word insanity comes to mind. I become a very different person….a crazed person. I told Jeremy….when it is at it’s worst….I feel like yelling like a crazy lady and grabbing my nurse and begging her to help me. It really is not fun. It has now happened to me three times. After my mastectomies, then reconstruction, and now today. This time it came on quicker and was probably the worst I’ve experienced. I wanted to rip the bandages off and itch everywhere like crazy. I would have invited anyone in the area to itch with me…..lol. What a funny picture that would be.  Everyone picking a spot and itching. But it would be downright gross. But Jeremy will scratch for me. What a good hubby he is! So the Benadryl only helped slightly so they got some hydrocortisone cream and we caked it all over. Finally, some relief. They decided then that I should stay the night. Much of the itching is gone thankfully. I’m on some sort of prescription and we rotate the prescription meds with the Benadryl every few hours and it keeps the itching under control, so now I can rest some.

On a good note. Before I went in to surgery Dr. D used his marker to plan out his strategy. On the sides where it pooches a bit under my armpit he suggested lipo’ing the area and asked if it was ok. Is it ok?  Is it ok?  He could do lipo on me anytime, anywhere! I would never not say yes to lipo anywhere but my breasts….lol! So he lipo’d my back fat and the sides of my hips a bit and after a tough cancer journey he gives me perks like this. He is genuinely a very kind man and a great surgeon. I am so grateful to have a surgeon who I really trust and who is helping me feel better about my disfigured body.

And if I sound super chatty and happy in this post, I am….lol.  Thanks to a little magic pill called norco I am feel’in real good….lol!  I’m just hoping I don’t come back and read this and realize how loopy I was.  Because then I get embarrassed by my misspelled words and sentences that don’t make sense….lol!  I have a good excuse:)

Well-done

Would be a nice way to describe my chest and lymph node area right now.  I think burnt to a gross bubbling curdling painful peeling mess is more accurate.  I am excited to say I finished radiation Monday of this week.  I went twice a day for 4 and a half weeks.  Even on Black Friday, they actually opened the place up just for me.  I didn’t miss a single appointment and when the machine broke I agreed to driving half an hour to a different facility.  When I woke up Tuesday morning, I was in a short state of confusion about what to do with myself.  Of course I have my 2 year old and 4 year old to keep me busy, and there’s holiday stuff to be done, but surely I should be at the cancer center at some point today right?  Then I remembered, nope I’m done.  From here it’s just Herceptin every three weeks with doctor’s appts. and check-ups.  Feels kind of strange after the last 8 months.  I asked when my first post-cancer scans would be and was told ‘not for a while’.  I’ll ask my regular oncologist at my appt. next week because I think I would like to know that I’m still clear.  As for regular life, I am looking to the future.  I enrolled to take a couple of medical classes starting Jan. 4th, thinking to combine my business degree and background and maybe work in the medical business field.  We’ll see.  It’s a nice relief to see a possible future after being diagnosed 8 months ago with IBC, what goals I’m working on don’t seem as important this minute as the fact that I’m still here to work on them.

The world of lymphedema (by Sarah)

I have been welcomed to the world of  lymphedema. After I was diagnosed and had surgery my surgeon briefly talked to me about it but said that none of her patients got lymphedema. I thought I was safe, thinking I would not have a problem with it. I was wrong, I have been suffering from it for some months now and did not realize it. I am suffering from mostly truncal lymphedema. Like Stella my symptoms are mostly pain with a bit of swelling. I have made lots of trips to my oncologist complaining about my pain and was worried that my cancer had come back. Little did I know that lymphedema is very painful. Something I was not told before. I have been to a therapist 4 times now and it seems to be working for me. I am educating my self on how to move my lymphatic fluid that builds up under my arm and in my back. I have been fitted for a sleeve and a vest as well. I will be interested to see how the vest works, I will be wearing it at night and am hoping that I will sleep more comfortably.

The signs of lymphedema may include:

• swelling in the breast, chest, shoulder, arm, or hand
• area feels full or heavy
• skin changes texture, feels tight or hard, or looks red
• new aching or discomfort in the area
• less movement or flexibility in nearby joints, such as your shoulder, hand, or wrist
• trouble fitting your arm into jacket or shirt sleeves
• bra doesn’t fit the same
• ring, watch, and/or bracelet feels tight but you have not gained weight

Early on, the lymphedema may be relieved by raising the affected limb and the skin usually stays soft. But over time, the swollen area may become hot and red and the skin hard and stiff.

Here is a link with more information that is very helpful. My advise is to educate yourself, know the signs of  lymphedema and know your body. Talk to your doctor and be persistent. My doctor told me I did not have a problem but the lymphedema doctor saw my problem right away.

Message, the right kind of message is the key, I was not educated and was not doing my message correctly. If you do have signs of lymphedema get to a good certified lymphedema therapist right away. Your doctor should have a list of good therapists in your area. I feel more relaxed now and know why I have this pain. The pain isn’t fun but I am comforted by the fact that I know what is causing it and am getting the tools to deal with it.

missed milestones (by Laurie)

This  year, two dates -  November 24th (the anniversary of my diagnosis of metastatic breast cancer) and December 2nd (the anniversary of the night I found the first lump) – came and went without causing me the anxiety of previous years. I noted both events in passing, took the time to breathe deeply and be grateful, and then got on with my day.

It’s been four years since I found the lump. It’s been three since the cancer spread to my liver. And it’s been two and a half years since my first clean scan.

I had an appointment with my oncologist yesterday. I had nothing to tell him. He said, “Shall we keep dragging you in here every few months just to say ‘hi’?”

I readily agreed.

I have chemo next week. They’ve been building a new treatment centre for what seems like years. I have often jokingly pointed in the direction of the new building and said, “They’re building that for me.”

Yesterday, I discovered that the new building is open and the chemo room has been moved. No more listening to the sounds of construction during treatment. No more listening to the intimate details of the constitutional issues of the patient beside me. There will be a little more light and a little more room and hopefully, a little less noise.

I’m kind of excited.

And yes, that is somewhat ironic. I have lived long enough to be excited about getting chemo in the new building.

I love being right! by Stella

Pardon me while I gloat… I do so love to be right.

I’ve been telling all my Inflammatory Breast Cancer (IBC) friends and myself that the current survival statistics don’t apply to us (those diagnosed since 2001). Why? Well because back in the day the doctors used to treat IBC just like every other breast cancer out there instead of the nasty variety it really is. Typical treatment used to be diagnosis, mastectomy, chemotherapy and radiation. All of this followed relatively quickly by recurrence. Lovely.

According to the National Cancer Institute, women diagnosed with IBC between 1998-2001had a 5-year relative survival rate of 40% (it used to be 25%!) compared to roughly 87% for other breast cancers. But that was before neoadjuvant chemotherapy. Neoadjuvant is chemo given before surgery. This type of treatment makes all the difference in the world to an IBC patient!

Inflammatory breast cancer’s symptoms, which are listed below, cause the breast to grow really large, really quickly. In my own experience my affected breast grew to near double the size of the other (which was no small size to begin with) within about 2 months time. Also, it’s quite the non-specific cancer cell – more of a general inflammation not an actual tumor. All this makes it very difficult, if not impossible, to get clean borders during a mastectomy. So the nasty little cells would come back to visit quickly and were not please about being uncerimoniously evicted in the first place.

Here are general symptoms of IBC:

• A breast that appears discolored (red, purple, pink or bruised);
• A tender, firm and enlarged breast (sometimes overnight);
• A warm feeling in the breast (or may feel hot/warm to the touch);
• Persistent itching of the breast (not relieved with cream or salve);
• Shooting or stabbing pain;
• Ridged or dimpled skin texture, similar to an orange peel;
• Thickened areas of breast tissue;
• Enlarged lymph nodes under the arm, above/below the collarbone;
• Flattening or retraction of the nipple;
• Swollen or crusted skin on the nipple;
• Change in color of the skin around the nipple (areola)

If you want a great visual go to Lemonland.

Good thing for us IBC patients that neoadjuvant treatment is the new and improved way of doing business because it has increased our 5 year survival rate. This is where me being right comes in. According to the Mayo Clinic neoadjuvant therapy combined with surgery, radiation and more chemotherapy has increased IBC survival to 50% at the five year mark. Best of all, nearly 1/3 are alive 20 years after diagnosis!!! Plus, general breast cancer mortality has dropped 2% a year since 1990.

We are making strides, folks!!! Large strides! I intend to be here twenty years from now, beating the internet-at-large about the head and neck until each and every one out there knows about Inflammatory Breast Cancer and why it’s so insidious. Or… until it’s completely wiped out - which ever comes first!

Cross-posted to I can’t complain any more than usual