Hard Week

I have received a lot of emails, asking how this week has been going. It has been a very hard week.
In terms of my treatment, I have been extraordinarily fatigued. I am very thankful for the help of my mother-in-law and our babysitter, Ellie, since my exhaustion level is extraordinarily high. Otherwise, I am doing well.
My dad had his biopsy on Monday. The first results were negative, but his doctors think maybe the biopsy missed the tumors, so he will get a different kind of biopsy within a week or so. The reason for the delay is that he was transferred to Albany Med last night due to issues with his difribulator. On Monday they are going to take it out. He has an infection they want some antibiotics on hand for, which is why they are waiting until Monday for the surgery. He remains quite weak, but his mental clarity seems to be improving each day, which is good news. I hope soon he has the strength to move from his bed to a chair.
On Thursday our dear friend Cory called us to tell us her husband, Bob, collapsed while at work in Rhode Island. While the hospital tried to save him, our beloved Bob passed away this morning. Bob had a huge personality - self-deprecating, but smart as a whip on those things he loved. He has a beautiful girl, Zada, and foster son, A, whom he doted on. My heart aches for these sweet children, but I know they will remember their dad both from their memories and the stories we tell them of pot luck dinners and game nights we shared. Cory is the most beautiful person - full of hope and light and kindness, and I know these traits are what will help her through this. But I am going to be honest, I am furious she has to go through this. I am angry and sad and heartbroken because she deserves an amazing life - not this. And I know her life will be amazing, but she will always have a hole in it - a hole that should not be there. Not yet.
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News

I have so much to write about: Father's Day, the incredible spaghetti benefit, the wild and crazy kiddos, and a health update. But, today I would like to ask you all for your prayers for my dad.

For the past three weeks my dad has been becoming weaker and weaker for no known reason. This morning he was transported to the hospital via ambulance because he was so weak. He has been admitted to the hospital and they are trying to determine what is going on. He had a great deal of blood work and a PET scan last week and we are hopeful when his oncologist reviews the results tomorrow, there will be a clear direction of treatment.

I had a pretty saucy chat with God last week. The gist being to leave my mom and dad alone. They have been through enough and have more than enough on their plates. I think God appreciates my directness. At least I hope so.

Chemo update

I went through my second round of chemo this week. Due to the holiday, I had four days of treatment rather than five. The hope is that a day less of treatment will help limit the toxic effects I experienced last time. Dr. S is also being proactive by having me get a Neulasta shot (which will prevent my white cell count from plummeting) and I am also using an oral swish my friend Courtney recommended to him. The swish will hopefully limit the mouth ulcers - so far, so good.

That being said day 6 of my last cycle is the day everything went to hell for me, and tomorrow is day 6 for this cycle. Fingers crossed.

I am feeling some severe fatigue this cycle. As in having to sit down and rest after climbing a flight of stairs and only being able to lift Crosby with effort or help. It is frustrating, but I am trying not to be overcome by it.

Last complaint - I had my Sandsosatin shot in my bum and that hurts! I thought I was having severe hip pain again, but I think a large part of it is this shot. Icing it helps, but it hurts for several days and radiates across my back. Grrrr.

Fun story: We opened our pool a couple of weeks ago. It was 57 degrees last week and the older boys readily went in. This week it was up to a balmy 65 degrees and they could not wait to get in! Kyan was practicing his cannonball and Rory would only jump with his goggles. Crosby wisely stayed out of the water with mom and dad. The boys stayed in until they were bluish and happily (for mom and dad) fell asleep quickly tonight.

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."