Memorial Day Weekend 2008

My sister-in-law has been here providing wonderful support - soups, teas, chores, and good conversation about everything from flowers to politics. And my daughter Liza arrived last night and is making a matzo ball soup for me. She is eating exclusively from the menu at the Frontier! We've got a handful of movies.

The radiologist is confident the treatment is going well. The "Boost" is different from the other treatments which were one blast on the top of my pelvis and the other underneath. For this one after lots of measuring and xes marking the spots is nine different blasts (not that I can feel or see the xrays). The machine is positioned in a starting point down to the right and blasts and then moves around a few degrees and repeats until after six moves it is right under me. Then after those seven it is repositioned to treat first the left and then the right groin. So it's nine all together. Very thorough. As the radiologist noted, you can only radiate an area once so she is making sure no existing cancer cell is left untreated. Although my pelvic area looks like a freshly boiled lobster, she says I'm doing really well and is pleased that I've taken good care of myself. I have some burns that are starting to peel but she says thanks to my wearing the kind of baggy, low hanging crotch kinds of trousers that are popular among way cool young men, I've saved myself a good deal of irritation.

After seeing the radiation team, I went to see the oncologist who urged me to move beyond tylenol and onto the oxycontin. "What Rush Limbaugh is hooked on?" Liza asked. The oncologist said yes but not to worry. "Your mother isn't going to be an addict". I hadn't realized how helpful it would be. It is a very happy pill and I'm enjoying feeling quite pain free. Next week after the radiation ends I can start an ointment which was developed in Switzerland and has no alcohol or steroids in it and which will help my skin to heal.

She also said to keep a sharp out for the possibility of another infection. She isn't predicting it but wants to be prepared: she is on call this weekend - I heard that as wonderful news. "We'll skip the ER step and get you admitted immediately." Take your temperature two or three times a day.

The nurse took the chemo pump out. And she said to be careful because the mouth sores are starting. Another opportunity for infection. The chemo side effects kick in 6 to 10 days post treatment.

But I feel hopeful. I'm glad to be off the chemo. I'm glad there is a three day respite before the last two radiation treatments. I'm loving my new best friend oxycontin. I think it will take me more time in June to get back to normal but I will definitely get there.

As always, thank you so much for your friendship and caring gestures. I'm grateful. I hope you are planning to stay and dry and warm this weekend! Here in NM it is raining and there is snow in the mountains.

Betsy

Good Days and a little bit about this Cancer 20 May

The last round of chemo began yesterday. It's the same format as the one Irene described in the early days: I carry the pump in a lightweight shoulder bag (the sort of thing you might carry a phone and your license and a few dollars for a night of dancing, for example). It's attached to a semi-permanent subcutaneous port which is attached to cable under my skin and linked to the jugular.

I started feeling well on Sunday after three dreary days. Sunday was beautiful. It was the second day of no radiation and I did some watering and house frau chores and actually got quite a lot of work done. It was a terrific day.

And I think the reason this new chemo course is going well is that I'm only getting 5FU and not the mitomycin, too. So there is little discomfort. Aches from the radiation and some digestive upset but NOTHING like other times.

When I was first diagnosed with this cancer I really couldn't bring myself to be straightforward about it. But now I can talk about it with anyone who wanders into my periphery. It is squamous cell anal cancer. It is very rare as cancers go - not unheard of but uncommon. The wonderful nurse at Lovelace who administers my weekly blood tests and does the infusions of saline and the chemo had never treated anyone before and she is a experienced longtime chemo nurse. She and I nipped into the bathroom so she could see the extent of the changes in my body and the amazing tan which may be useful if I decide I need a bikini waxing and don't want to be too pale!

To say that this cancer is a major invasion of one's "private parts" is a euphemistic description of what this treatment is like. But the radiation techs are gentle and respectful and they don't tattoo anymore - just lots of xes marking the spot and the xes connected with marking pen lines. I get radiated in increasingly shrinking areas tho the quantity of radiation stays the same. And it is still a blast in the pelvic area first on the bottom and then on the top.

The nurse asked me to write up some of the effects of the radiation like the feeling that the the urethra and bladder and other neighboring organs are shrinking along with the cancer. Maybe I'll do that. She says there is nothing she knew about to help nurses prepare patients. The radiation nurse had some info but it had not drifted over to oncology-hematology.

So Celia stayed here yesterday and we had a good day working and enjoying time together. She picked up my sister-in-law from Tucson at the airport this morning while I was at radiation. We are catching up on family stuff and talking about Africa where her son lives. Mostly we are talking about what we have read about Africa including novels and non-fiction. And my dear daughter comes on Thursday night and will here until Tuesday morning.

Friends continue to bring food and flowers and I continue to be appreciative of your thoughtfulness. But the truth is that mostly I'm thrilled to be more myself. Having energy, being able to complete a thought, being able to work (well, not full bore), not on the verge of tears feels miraculous.

Thank you all.
Betsy

Suggestions for Funny Movies

Adhering to the theory that laughter is good for the soul and the mind and the body, Betsy, Irene and I are asking you to let us know some of your favorite funny movies of all times.  Bets enjoyed The Big Lebowski.

Store manager at Hollywood Video recommended:

Mr Bean's Holiday

Over My Dead Body

Evan Almighty

Not sure about those, so we are requesting titles fro you all!

Warmly,

Celia

Friday 16 May 2008 Seven Days to Go

Today the oncologist gave me the ok to begin the last round of chemotherapy. The five day pump will drip in through the permanent port from Monday through Friday of next week. I'll go in on Wednesday and Friday for additional fluids to ensure against dehydration due to diarrhea which is an ongoing fact of life with just the radiation.

On Tuesday the radiology techs will do a new CT scan to measure for the final radiation stage. The first 3.5 weeks were one size, this week it was smaller, and next week for what they call the boost, the area will be shrunk again. The amount of radiation doesn't change, just the target area.

This week has been harder than last - just lots less energy and Thursday I just felt bummed all day. But this morning I woke up feeling more cheerful and did the solid-waste management with equanimity. I think it didn't help Thursday's spirits that I watched No Country for Old Men on Wednesday night. Thursday night I watched The Big Lebowski and think I will follow that genre for before bedtime amusement.

I'm looking forward to my sister-in-law's coming from Tucson on Monday night. She will stay til Friday or perhaps longer and my daughter is coming on Thursday evening and will be here through the weekend. It will be wonderful to have her here, too.

I continue to be grateful for the loving messages, cards, calls, visits and offers of help from this generous community. You have been patient listeners and always offer good cheer. You have helped me reach this milestone. Thank you.

With great affection,
Betsy

12 Treatment Days to go - Friday 9 May 2008

Today I started the second series of radiation - it is the same amount of radiation but focused on a smaller part of the original layout. My counts are all up from last week and are close to but only slightly below normal. I took a serious pain pill last night and the aching didn't keep me awake and the "no worries" Lorazepam helped with good night sleep, too.

The red blood/oxygen ratio is great so I feel energetic. This is such a boost. I'm not thinking about this is terms of Day 18 or Week 4 Day 3. I'm thinking about 12 treatment days to go. I need to get through next week and I think I will - feeling very well today and there is the two day weekend break coming up before and after.

If I can get through next week then I can start chemo on the 19th and that is the beginning of the end. The radiation will be set to boost at that time: same amount of radiation but a smaller area.

Thanks you all for your friendship and interest and good energy.
Betsy

PS I was surprised to see the slide show!

Cinco de Mayo - Good news!

On Friday 2 May my oncologist reported that the tumor has shrunk 2/3 its original size. What a morale boost that news is.

This morning I started radiation again. Because of the break, it is Week 3 Day 4. Altogether three weeks and one day to go. The last week will include chemotherapy again. And there may need to be another break.

I stopped this morning to meet with one of the Challenge vendors who had seen me just before I was hospitalized with the sepsis and he commented on how well I look now.

So. Thank you for staying in touch and with me. I appreciate it.

Betsy

Betsy is home!

Betsy will resume radiation on Monday, the 5th. Her brother is here from Tuscon and they are relaxing and enjoying her new big screen TV! She will have one more shot of chemo near the end of the three more weeks of radiation.

So, she is one half done and hoping to get through the second half with flying colors!

Celia