Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Tuesday, January 13, 2015

Hello 2015: Pt 2

Back in mid November I met with my oncologist. I hadn't been back since about three weeks after I was done with my last chemo and I was WAY over-due for a check up.

I thought I was done. I had a lumpectomy, then chemo, then mastectomy. I can't take Tamoxifen though, and my risk of recurrence without that drug is about 25% so I need to get my ovaries out to reduce my estrogen related risks.  Still, I had done everything I needed to do. All that was left was finish the reconstruction process and move on with my life.

I was stunned, literally brought to tears, when my doctor insisted I go on a drug called Arimidex. It is not just this drug, but that I will have to take it in combination with another drug called Zometa. This is given as an IV infusion every 6 months as long as I'm on the Arimidex. The two drugs have a combined list of side effects that is daunting. But what are my alternatives? At this point my risk of recurrence is very high.

I was getting tired. This is a long battle and I am weary. As much as I remind myself that I am alive, that I don't have cancer anymore that we know if, that there are others far worse off than me, I could still feel myself sinking. I was no longer able to see the positive in much of anything, and my sense of humor was disappearing. Surely with all the things I have done so far I didn't *really* have to go on these drugs? I sought a second opinion.

My new oncologist explained things to me so much better. There is no doubt in my mind now that I must go on these drugs. But, he wouldn't let me leave without having a bunch of things done and getting other visits scheduled. Another to-do list for me:

1) get a ton of bloodwork done, 17 vials drawn. One of the tests will be to look for a genetic marker for strokes which will help in decision making related to cancer treating drugs in the future.

2) Scheduled an appointment with the Onco-gynolcologist. She will be doing my ovary removal, hoping for surgery the first week of February.

3) did a DXA scan to check my bone density. This is crucial before starting the other drugs since they can deplete minerals from the bones.

4) I must drop 60 lbs as soon as possible. Even though my ovaries will be gone, the adrenals still produce estrogen as does body fat. I need to have as close to ZERO estrogen in my system as possible. I am scheduled to see a metabolic specialist from Mayo.

5) I have been crying for two months. Tears that come out of nowhere that overwhelm me. The past eight months combined with the prospect of five years on the new drugs I have to take, throw some surgeries in there and a major setback to my reconstruction, and my emotions were getting the best of me. I had no control over them anymore. My new oncologist very gently suggested I talk with my primary care physician about getting on an antidepressant. "This is a very normal response to cancer and its long-term effect on your life. But I need you thinking positive about the next five years, not dreading everything and talking yourself into every side effect before you even start taking the drugs."

Ok, yeah, he had a point.

Up next: Hello 2015 pt 3…Pulling up my bootstraps, with a little help.

Sunday, January 11, 2015

Hello 2015, pt 1

2015, you're going to be a better year, I just know it!

However, if 2015 is going to be a better year, I need to take some steps to make it happen. 

In my Christmas Eve post I mentioned I had been in the hospital. Those who follow me on the FB know some, not all of the details. Here is a quick recap (which will be followed by changes for 2015):

Remember: September 12 - double mastectomy, October 27th - surgery to replace both tissue expanders and clean up infection and scar tissue.

Week of November 17 I went in for a tissue expander fill, but first asked my doctor to take a look at my incision from my last surgery. She decided to hold off on the fill that week and wanted to see what the incision was going to do. 

November 26th, day before Thanksgiving: I have an area of really thin skin (which really means no sub-cutaneous fat) that wasn't happy being stretched and was splitting open. The surgeon did a scar revision in the office. Come back in two weeks.

Thanksgiving Day I get hit with Influenza.

December 10th: incision still isn't looking good. Plastic surgeon removes a lot of fluid from the tissue expander to allow enough skin for another scar revision in the office. Come back in two weeks.

December 17th: Incision is looking better, but no fills allowed. Lets leave it alone until after the holidays and just give the skin time to heal.

Friday, December 19th: My sister and I spent a fun Friday night playing with my polymer clay buses. Aren't they cute?

Saturday December 20th: Dean and I do some Christmas shopping, arrive home about 5:00. At 6:30 my pec muscle on my problem side is suddenly very sore and stiff, as if I've been lifting weights. I have very little sensation in my chest so I'm concerned that I can feel this. About an hour later I spike a 103* temperature. I think I have the flu again and call the hospital to see if I can come in and get Tamiflu since I'm in the "high risk" group. I decide to wait until morning because I have a suspicion this isn't the flu. I go to bed hoping the fever breaks, but I am miserable.

Around 2:00 a.m. I woke up with an odd sensation in my chest. I went to the bathroom mirror and lifted my shirt. I was a bit horrified to find the "odd sensation" in my chest was a significant amount of swelling. Crappity crap crap!!! I decided a few hours isn't going to make much difference so I went back to bed.

8:00 am: Called my surgeons office. The Dr. on call told me to head to the ER where an ultrasound is done and there is a huge amount of fluid that they drained and sent out for cultures. (so very weird watching on the screen as this extremely long needle is inserted into my boob and the fluid is all sucked out! While they were waiting to admit me they went ahead and started me on two different oral antibiotics (vancomycin and Gentymicin) Only I reacted to the Vanco so they added benadryl which knocked me out for several hours.

I stayed on IV antibiotics for two days while also getting more benadryl with each dose so I mostly slept. I still had a 101 - 103* fever so sleeping was fine with me! My chest continued to swell. I was not even an A cup before the infection but now I was swollen so huge it took both my hands to cover the area. The swelling went all the way around to my back. Thankfully it didn't really bother me much due to lack of sensation. Still I was on pain meds because my BACK was killing me from the hospital bed. LOL I made Dean come into the bathroom in my hospital room to take some pictures of my chest. Nothing like some really bad porn shots for the family scrapbook! LOL

I was so upset by this whole turn of events. I knew I would be having surgery and I would be flat on that side. No breast at all, not even a fake one. I wanted to be done. Just leave me alone and I will be flat. I don't care! I didn't care about bald and I don't care about flat. But I DO care about having one boob (called a "uni-boob" in the breast cancer world) and I did NOT want to do that. DID NOT! I was sick, I was miserable, I was crabby, and I had a massive caffeine withdrawal headache that I could barely see past. All I could do was cry or snap at someone. I was one hot mess!

 Tues December 23rd I had surgery remove the tissue expander and clean up the infection. Afterword my surgeon told me it was a mess in there. I am now flat on that side and maybe almost a B cup on the other side. I am not wearing a prosthetic because, like wigs, they pretty much drive me crazy. Not only is it very obvious even in clothes, but the fabric of all but the thickest materials falls right into the very deep DENT I have in my chest. 

Christmas Eve: Discharged from the hospital, yet another drain in tow.

Coming up: Meeting with my new oncologist and decisions that must be made