Spaghetti Meal - 6/9 at Blue Moose Tavern from 12-4

Some of my dear friends, with the support of the Blue Moose Tavern, have organized a spaghetti meal benefit for my family. The information is below. I hope to see many of you there!




Please let me know if you have any questions.

Is It Working?

I get lots of folks asking if the radiation spheres and chemo are working. I will not really know until the end of June when another scan (MRI or PET) is done. What I can tell you is I think it is working, I think I am in the 25%, I think the large doses of three chemotherapy drugs are worth the side effects. Why? Because I feel the best I have felt in months. I am able to eat regular food; the pain in my back and hips has decreased to the point I can walk, play with the kids, and be 'part' of the household; and mentally I feel better (likely due to decreased meds). I feel like I have my life back.
Tonight I go to have my head shaved. My hair is falling out fast and furious and it is gross! I wear a bandana to keep it contained. I forgot how sensitive my scalp becomes as my hair comes out - it is bizarre how it feels.
My husband's cousin has recently joined me in Stage IV cancer-land after previously being in remission from breast cancer. She has an amazing attitude and I know she will join me in outlier-land. On her Caring Bridge blog she ends most entries with a funny anecdote and I am going to steal her idea (hope you don't mind, Cory!).
Rory is trying to learn knock knock jokes, and practices with Kyan. Yesterday morning during breakfast the bigger boys said knock knock over and over. Then, out of no where little Crosby, who only has about 4 words that he uses, says "knock knock." We all cracked up, Crosby broke into his million-dollar smile, and then proceeded to say knock knock all day. It was adorable.

Stamina

I was going to write a post about stamina tonight, but I am tired. Ironic, eh?

I came home from the hospital on Friday and am doing fairly well, all things considered.

More soon. I'll aim to start and entry earlier so I am not so sleepy.


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Hospital Stay Number Two

Ah, here I am enjoying the fine accommodations at Tower Two, Room 21 Glens Falls Hospital. I came in for a routine check Monday morning and by early afternoon was admitted due to the side effects from the chemo. Short version: I cannot eat or drink enough to stay hydrated and be able to take my medications in pill form so I am here receiving IV meds, liquids, and electrolytes as needed. The source of the problem seems to be those nasty mouth ulcers I wrote about over the weekend.

For those of you who remember my last hospital stay, you may be groaning right now since that one was so miserable. This stay could not be more different. I have experienced only fantastic nurses and techs. Many who have sat at chatted with me (even at 3 AM), and all who have gone out of their way to make my stay as positive as possible, while also trying to help me get home as soon as possible.

On Monday night I joked with Kelly that his nights would be easier because he would now just have to take care of the kids! (I asked for a lot of middle of the night crushed ice runs.)

Rory and Kyan have both been to visit me and did really well with the hospital setting. The adjustable bed was a huge hit with them and although they were curious about my accessed port (for those who haven't seen one, it looks a lot like an IV hook up, just in my chest with a clear bandage over it), riding up and down on the bed was more exciting.

I am not sure when I will get out. As Dr. S said (by the by, I have a whole new realm of nicknames I have learned for him up here...), "We did this to you, now let us help fix it."

New Treatment

On Monday I started a new round of chemotherapy. Dr. S opted to be aggressive (raise your hand if you are surprised!) and I am receiving three different types of chemo at once. I have one week on treatment, three weeks off, then we go again. In about two months I will get a CT scan to determine both how the chemotherapy is working on the lymph nodes and how the radiation spheres have impacted the tumors in my liver.

[Note: Read the following paragraph when not eating.]
The side effects from this combination are quite different from the other types of chemo I have been on. I am still exhausted, but I also have a combination of acid reflux (which I believe is from the steroids they give me), mouth sores, and wet heaves - which leads to a big old ball of ouch when I try to drink or eat. I am hopeful these side effects pass quickly.

I am also still battling the hip pain. It is driving me nuts. I can't move comfortably and I think you all know I like to be active. After MRIs and x-rays the docs have concluded there is nothing physically wrong and the tumors have not spread to my bones, but there is inflammation - likely from the radiation I had last summer and fall. Unfortunately because I am on a blood thinner I cannot take something like Motrin, so I am on prescription drugs to help me with the pain. And those make me groggy...it is a vicious cycle.

The last bit is that I will lose my hair again. I am okay with it, but I was really liking my short curly style. Now I just have to find my bandanas because my noggin is not fit for baldness! (Don't try to tell me it is...it is bumpy and striped. Yes, striped.)