Tuesday, January 6, 2009

A Busy, Emotional Week

The week has gone by quickly and I'm off to chemo again in an hour. I thought I'd take a few minutes and update everyone.

My sister, Pam arrived on Wednesday along with my nephew, Connor. Connor is one year younger than Michael. Pam took him and my two boys up to Flagstaff for a weekend of skiing/snowboarding and they had a great time. Then, last night, Michael took Connor to a Ska concert. Ska music is a lot of instrumental; saxaphone, trumpet, etc. with vocals. They spent the evening body surfing the crowd and mosh pitting and came home exhausted and sweaty. Teenagers' idea of a great time! Connor left early this morning so he can get back to school. We'll miss him.

One of the highlights of the week was Joe and I going up to Sedona for the weekend. Joe found a place to stay right on Oak Creek. It had a fireplace and a jacuzzi right in the room. We drove up Friday night and went out for a great dinner at the Cowboy Club. This is a steak house where many movie stars including John Wayne used to eat when they were in Sedona filming. Saturday, we had breakfast in the room and then headed into town for a day of browsing through the shops and galleries. There are many beautiful things to look at. I felt a little sad for the shopkeepers. There were a lot of people in town looking, but very few purchases being made. We were met at the door of most places we went into and told that everything was 25% off. I felt bad for not buying anything. By 2:00 we were tired out and headed back to the place we were staying for a while. Just in time to see the Cardinals game! The housekeepers came in while we were watching the game. Joe was sitting on the end of the bed in front of the TV and I was sitting in a chair off to the side, working on a scarf I'm making for Joey to take to Flagstaff and watching the game. After the housekeepers left, Joe said they were probably thinking, "Poor girl. Visiting Sedona for a romantic weekend and her husband is making her watch football!" In reality, it was me who wanted to watch the game and Joe humoring me! Another nice dinner out at an Italian restaurant that was pricey, but not as good as Rigatoni's here in town. Sunday morning, when we woke up, it was snowing outside. The rock formations were beautiful with the snow on them. It was a wonderful, romantic weekend.

Another highlight of the past week has been helping Joey get ready for his move up to Flagstaff this coming weekend. We are all so excited. We've been out buying all the things he'll need in order to live away from home for the first time. NAU has a hotel right on campus. We made reservations for Friday and Saturday night. That way, I can go and help even if I'm not feeling well from the chemo I'll have a place to rest when I need to.

It's also been a busy, emotional week on the cancer front. Through the listserve I joined I've been in touch with a lady who is the president of the Inflammatory Breast Cancer Foundation. She has spent time emailing me and also put me in contact with the doctor who is the head of the Inflammatory Breast Cancer Center in Houston, Texas. Both of them felt that although my oncologist is treating me with the standard protocol for IBC, that he isn't doing enough to monitor my response. The swelling and tenderness under my left arm which had gotten better after my last chemo is back and they were concerned about this. They both felt I should be seen in Houston and that I should plan on having my surgery done there when it was time by their team of specialists. The idea of going to a center that specializes in this rare disease seemed to make sense, but once we started researching it is out of network for both of our insurance plans. The bills associated with my treatment are huge and there is no way we could afford to cover 40% of the cost. So, I was left feeling like I'm not getting the best treatment from the oncologist I have, but unsure what step to take next. Then, Joe spent a long time yesterday with a good friend, John, whose wife had breast cancer. When Joe sat and talked with Pam and I about their conversation, it made it all the more clear to us that the oncologist I have now is not doing enough. John highly recommended the oncologist his wife saw and we called first thing this morning and made an appointment.

In addition to this, Pam was doing research on the Internet last night and found that there is a doctor up in Tuscon who did her fellowship at the IBC Cancer Center in Houston and has started an IBC clinic at the U of A Medical Center. I have no idea why the doctor in charge of the Houston program wouldn't have told me about this resource so close to home other than there is some competition between centers. This left me with a bad feeling. We are going to contact the doctor in Tuscon later today.

As if all this going on wasn't making me feel frazzled enough, while we were researching this doctor up in Tuscon we found a video presentation she made to other doctors giving an overview of IBC, it's symtoms, diagnosis, and treatment. In the video, she says that the prognosis has not improved since the 1970's and that the five year survival rate continues to be somewhere between 30 and 40%. I've been told that they've learned a lot about treating IBC and that the survival rates were improving. I'm focusing on this and on the women on the listserve who are long-term survivors, but it was definitely unsettling last night to hear that video.

So, as you can see, lots going on around here. I'm off to chemo in just a few minutes. I'll let you all know what we find out from the new doctors. Please keep the wonderful thoughts and prayers coming, they help immeasurably.

Love you all tons!
Till next time,


LoriH said...

I'm so glad to hear that you're being so proactive with your treatment. I continue to pray for you, your family, & your quick recovery from chemo. Your strength is amazing!

LoriH said...

I'm glad to hear that you're so pro-active in your treatment. I continue to pray for you & your family & also that you'll feel better from your chemo a whole lot faster! Your strength is amazing to me!

velvet brick said...

Hi Martha! I truly believe that there are good forces working in your favor for you to be directed in new directions for treatment!! I see this as a positive step which goes further towards your beating this disease! As unsettling as the news might be, the positive is that better treatment possibly lies ahead!! Yes!

I continue to pray for all of you and I truly have faith in all that this is the right step! I am so glad that you and Joe were able to have a great time up at Oak Creek and we'll call you again next time we head out for some 'nectar of the gods'!! : )

Love and hugs for you dear friend,