Cancer Update-By Jeanie

November 4, 2011

My dear family,

Time to do a cancer update to the family.

I had Alicia here for a week and she pretty much summed it up in the e-mail that she sent out. I still think that was my roughest week both physically and mentally. She truly was a miracle and blessing even though she was as sick as she was.

I think most of you have heard at least some about Utah. The one day in Provo was very rough on me and having company was even tiring, but it was an amazing week of rest, being spoiled, and running away from cancer so to speak. It gave me the boost I needed to come back and do more. Grand kids are truly wonderful medicine, as was music, good food, birthday celebrations, seeing family and friends I love etc. Sally gave us money that is helping us survive right now.

I am supposed to get ½ pay, but my paycheck this month was only $39.00. Still have to go talk to them about that.

Cara and Alicia were both SO SICK while they were here. However, Cara also did an amazing job. She did my hair every day, helped me get dressed and took good care of me. We went to a couple of big tests and doctors while she was here. It allowed dad to go to work. She actually got to see the plastic surgeon and oncologist. She rubbed my head and combed my hair over ½ hour one night. She gave me a really good back rub another time. Ahhhh, heaven. She helped me set up a cancer spiral- which has sections for all my meds, dr. etc.

So, here is my latest:

Cat scan. Showed fat in the liver, gall stones, and a hernia….but nothing that needs taking care of now. Good to go for chemo. That test was hard as they accessed my port for the first time and it stung most of the time. I also had to put my right arm over my head- the one that is dead and can not move. That was very painful. Laying flat does the vertigo thing too. Other than that, no biggie.

Echo test. Fun test. Not too uncomfortable. Very interesting to see ultra sound of heart. Lab technician and I were talking and laughing through the whole thing. My heart falls in the normal range and is safe to start Chemo.

Plastic surgeon. Had drains pulled a week ago Monday. Was so excited to get those out. He cut stitches and just pulled and it didn’t hurt. YES. I cried to Cara afterwards in the room because I was so relieved and happy. Showers have steadily felt better- but hard still with my aches and pains. My left side is doing very well. He had to pull out a clip and stitch that worked their way to the surface this week. I have some spots of leakage and it is still trying to heal. It is in very doable pain. The drain on my right side caused a lot of problems and pain and he pulled it out a little early on purpose. After a couple of days I had terrific swelling and pain and we thought it was extra storage of fluid. However, this week he tried to aspirate it and nothing came out. It is actually edema in my tissues. Not good, because that takes forever to subside if it ever does. Right now that is my worst pain. So, can’t go off pain pills yet, and still need lots of ice and pillows. That and lymph node pain is my hardest thing to deal with. Still getting saline pumped in each week. He puts it through a magnetic port and it does not hurt, other than the stretching, pressure and pain. Only have 150 cc left. Not much of a breast and misshaped right now, but that is OK. I have other issues.

Oncology. Went this week and met with him. He answered two pages of questions and was very nice. I am ready to start Chemo as soon as we figure out about the clinical trial I qualify for. We got the 25 pages of paper work. Kent and I each read over it and then had a long discussion about it. We were ready to talk to them at another appt. Thur. But miscommunication really got things messed up. I also went to chemo training on Thur. Another nurse taught it besides my nurse. She was very good about general info and the side affects etc, (took over an hour) but knew nothing specific to my Dr.. or his meds or protocol. We were frustrated last night when the clinical trial lady left a message on my phone that she was in her office all day and did not get messages. I wrote an e-mail to my nurse and Dr.. last night.

Today the nurse called and apologized over and over and answered lots more questions. Then I finally got in touch with the clinical trial woman and we also talked about an hour and went over lots. I feel really good about the trial. I have a 50/50 chance of getting the HER 2 medicine that the trial is about. It adds on 8 months of shots, but my hair can grow back, and I can still start radiation etc. I can also withdraw at any time. It won’t help if I don’t get it and there is no promise it will if I do, but I feel very strongly about paying it forward. That is the least I can do. I will get 10 years of close observation too which isn’t a bad thing at all. I will keep you posted on how that goes. We still have to meet with her and do a bunch of legal stuff, but I could start chemo as early as next week. I will have it every two weeks on my first 4 rounds. Then every week for 12 weeks. So fun…but a 3 week break in-between to recoup.

Well, time for more pain pills and some ice.

Love you all,xoxoxoxoxoox Jeanie (MOMMIE)