sueprogress’ blog

I've been absent from this blog for a very long time. But wanted to pass on the good news before officially signing off.The PET scan results came in on Friday, and the cancer is gone. GONE!!! It was a full-body scan and nothing showed up. Hard to fully take this in after being focused on battling the cancer for so long. 

So I'll be followed closely by the MDs from here on. This is a good thing as issues come up. I am currently experiencing some difficulty sleeping and weight loss, which is likely to be thyroid related. But whatever the issues are, they are not cancer.

Thanks for being there. Your love and support has been enormously helpful. We won!

Much love,

Sue

Well, they say things come in batches.........I guess it's our turn to receive the hard knocks. In spades! On Wednesday, Laura jumped from a bench to grab a branch on the school playground. It's a game she and others have played many times, but this time she missed the branch.The damage: a broken left leg, and a fractured left wrist. The leg has a large heavy cast which extends over the knee as the break was on the upper part of the lower leg. Her left forearm is also casted.

The MD wants her to keep the leg elevated as much as possible, so she's not returning to school for the remainder. And since her classroom is on the second floor with no elevator in the building, attending school wouldn't work. Especially since she can't use regular crutches given the wrist fracture. Fortunately her teachers are not concerned about her missing anything significant given it's so late in the year. Also fortunate for me that the nausea and stomach issues subsided in the last couple of days, so I can now look after her.

Unbelievable, huh? Can't help but ask big questions like, what is this all about?????? Why so much all at once?????Are we being asked to slow down and pay attention to all there is to appreciate in our lives? Maybe this is about learning to rely on others, rather than so often being the caretakers ourselves. Questions we can't  really answer but will continue to mull over.

Laura would love visitors, if you are inclined. She's being a trooper so far, but being immobile is going to be tough over time. The wrist cast will come off in about three weeks. The leg cast will get shortened in about a month, then she should be able to get around on normal crutches.

I'm hooked up to this darn chemo pump again, and must carry it everywhere I go!  But it's all made more bearable knowing there are only 2 days of radiation left, and 2 1/2 of chemo. A nurse comes out to disconnect the pump Saturday at noon. That will be cause for a celebration whoop and little dance, no matter how I feel. I'm likely to feel nauseated in the next couple of days as one of the chemo drugs has a 24 to 48 hour period of effectiveness, and can only be given once. There are other meds that help, but not as thoroughly as that one.

Had a reasonably good weekend, even with a fair amount of fatigue. It's a precarious balance, taking in enough liquid, food, salt, and rest to keep myself feeling decent, rather than overtired and unsteady on my feet. And trying to maintain this balance will be necessary through the next several weeks of recovery.

I'm begining to feel the loss of all the folks involved in my treatment these 61/2 weeks. The nurses in radiation have been terrific, providing lots of attentiveness and TLC. I will have to develop a new schedule or structure for myself to complement the acupuncture appointments (which  I will continue for some time), and will decide to return to work as I feel able. But, of course, I also feel tremendous relief along with the loss of the nurses and structure.

All my treators comment on how well I've done. Although I haven't felt well much of the time, it is unusual to come through this treatment without the pain of a sore throat or mouth sores, and therefore maintain one's ability to eat. I'll never know what helped me prevent these kinds of pain, but my best guess is that it's been the combination of homeopathic remedies, daily acupuncture, along with the prayers, love, and support from all of you. Thank you for being there. The next 3 weeks are likely to be challenging for the above reasons, so if you feel like calling, writing or emailing, I'd love to hear from you.

Well, I'm down to 6 left! Almost countable on one hand. The skin on my upper chest is breaking down from the radiation, and I have a swollen area on the right side of my face, which the MD thinks is an inflammed salivary gland, but I'm hanging in. Energy isn't great today so I'm resting and reading.

I stopped using the supplement cans on Sunday. I'd had enough sour stomach after a painful day on Saturday. My stomach now feels quite a bit better. It's a challenge to eat enough as the treatment takes so much from the body, and I'm trying to maintain my weight. I'm replacing the cans with yogurt smoothies and rice milk mixed with whey protein powder. And am continuing to manage to eat three meals. Sure wish I had more of an appetite. I look forward to the day when food is enjoyable again.

Reading a novel is helping me escape from all the discomforts and anxieties. It's called, "The Other Boyeln Girl" by English author, Philippa Gregory. It's very engrossing as it takes me away to Tudor England and the ruthlessness of a family who sacrifices their children to rise in status. I highly recommend it if you're looking for a good read.

Thanks to all of you who have sent cards, and email messages. I have so appreciated receiving them, even though I often don't often respond. Your thoughtfulness and support is helpful to my getting through.

We're in the single digits, friends! Nine more radiation treatments left, and one more 5-day chemo period in the last 5 days.The end is clearly in sight, and I feel galvanized by this.The MD was uncertain about the third chemo treatment, but decided yesterday that I'm doing "great" compared to the norm so he will most likely go forward. I was not happy to hear this, but am hoping that seeing the end around the bend will carry me through.

It's taken a few days to write. Between the am hospital appointments, and afternoon visits to the acupuncturist, along with sitting on my perch or place of comfort (the living room couch), it's been difficult to get updates out. Reading the newspaper, magazines, and phone contact with friends is about all I have the attention for these days. But I do feel fortunate that I am able to focus even in these small ways. According to the MD, many people in my predicament cannot.

And I am fortunate to be able to continue eating by mouth at this stage. My food options are limited to soft foods due to a very dry throat, and coming up with food options that appeal feels challenging at times. But most days, I am able to get three meals down, along with 2-3 supplement cans. My weight has dropped a little this week and I'm hoping to gain a little back over the weekend.

So my days are challenging, with stomach upset stiil there, anxiety about getting enough food and drink into me, and an itchy upper chest that is quite burned from the radiation. Still. I am getting through.

This treatment is such hard work! Definately the biggest challenge I've been faced with in my 51 years. Each day brings new struggles. Today anxiety is high about getting enough fluid into my body as my blood pressure was low yesterday. And it feels like I'm constantly drinking! Stomach problems have preoccupied me the last three days as the chemo, anti- nausea drugs, and radiation completely dried out my system.

Life just doesn't feel fair right now. That's all there is to it. My sticky tongue, and salty taste , along with the upset stomach make food unappetizing or downright detestable. I'm trying to use the feeding tube when I can. Oh, how I wish I had extra weight on me!

So many kinds of awful! I am aware that each day is not the same as the day before. And Peter is by my side, taking care of everything, and trying to be helpful in any way that he can. But this is a rough period.

It's been an okay past three days, and I am grateful for that. Peter's birthday was Saturday, and we enjoyed a dinner out with friends. I actually enjoyed the meal, and felt like a partner, friend, and mother again. Maybe the birthday fairy was helping us out. We certainly can use every bit of magic that's available.these days.

That being said, I go through periods of high anxiety now and then, particularly in the afternoons when the structure of the day is over.I start painting in my mind the worst scenario of what the next several weeks will be like, and worry about my ability to cope. I'm learning, however, that each day is different. Just because a spot in my throat was throbbing yersterday does not necessarily mean it will be worse tommorow. And so far, the liquid Tylenol is taking care of the discomfort. No need for Percocet yet.

I'm loosing my ability to taste in the last several days and this is a significant loss. Many foods taste really bland, or if they have even a little spice, they're too spicey to eat. And if the food is dry, it does'nt make it down my thoat very successfully. But I am still able to eat soft and moist foods, and gained 1/2 pounds this week, which the treators were happy about. I used to look at women with slim, perfectly proportioned bodies with envy. Now I look at those who are overweight, and wish they could transfer 15 pounds to me.I wouldn't have to work so hard at eating if this was possible.

I feel so lucky to be working with the acupuncturist, Evelyn. She does the Japanese treatment on my neck to draw the heat out. She is incredibly committed to helping me through, and sees me 4-5 times per week, including weekends. Since her husband recently went through a very similar treatment for tongue cancer, she's constantly sharing bits and pieces about what was helpful to him ( foods he could eat, meds that helped, a mouthwash he liked, etc.). Makes me feel a lot less helpless.

Started up chemo again this AM. They're trying a different, long-acting anti- nausea med that helped another youngish woman, and so far I'm feeling quite well. I HOPE, HOPE, HOPE this round of chemo will be easier.

Well, difficult times do  come to an end. Thank God! The nausea finally subsided between Friday and Saturday, and with the exception of a bad upset stomach yesterday, I've had several days reprieve. I developed a low-grade fever yesterday, which was a little scary, but it too passed. I've been working so hard at gaining back weight I lost during the first chemo cycle, however, that life hasn't felt very pleasant.After a phone call with a friend today, decided I need to focus on enjoying food again. I've been trying to get 4 cans of this darn food supplement down the feeding tube in the last few days, and then have no appetite for lunch or dinner. So phooey on you MDs and nurses! This is enough of an ordeal without adding to it by extreme force feeding! Anyone like to join me at a good restaurant for lunch? As long as I feel well enough, and can eat by mouth, I plan to treat myself to good food and good friends. Unfortunately, chemo starts up again Monday.

Peter has been a sweetheart. He's driven me to radiation the last 3 days, and was with me all day today. The stress of these appointments is hard for him to bear, as it would be for me if he was in my chair. But I am sooooo lucky he is my partner.

The food and other offers to help continue from friends, and we are very grateful. Such a kind and generous bunch! I hope we can stay connected, and reciprocate when this is all over.

For those of you who knew her, one of our two guinea pigs (Caramel) died last night. Peter and I feel sad, but Laura had little reaction. Casey, our pup, is now the object of Laura's affections. And during this time I think Casey is helping her get through. Little did we know a year and a half ago when he came to us.

This nausea has made for a rough ride! The last couple of days have been a bit better, with some ability to make phone calls and read, but it's not been fun. Turns out that one of the anti-nausea meds, Compazine was making me really jittery on Mon. and Tues., and this significantly contributed to my yuckiness. Until, that is, I realized the med was the problem, and called the Doc who stopped it right away. The same Doc told me today that he thought I was doing well. If this is well, I hope I don't see poorly. Those poor souls who do.

I'm having to force myself to eat when I'm not at all inclined. And I've begun using the feeding tube with cans of a form of Ensure to try and gain back some weight as eating has been so difficult. Imagine ME not interested in food!  As Lisa said to me recently, this processs is identity-robbing. New learning: It is possible to put liquid in the body in 2 orafices (mouth and feeding tube) at the same time. Didn't you always want to know that?

Again, Peter and friends have been there at every turn. They are driving me to the hospital and sitting with me while there, calling regularly with messages of support, taking care of Laura, picking up groceries, sending lovely cards,........And our neighbors have begun delivering meals every other night. Such a generous, loving community!

One enjoyable spot is acupuncture. I see Weidong 2x/week, and he plays this lovely Andrew Weil tape wile I'm resting on the table. Ahhhhhhhhhhhhhhhhhhh, one place of peace.

Hi all --

This entry is from Peter -- Sue has been feeling too nauseated to write for the last couple of days .

The first week of tx is now over, and Sue has been unhooked from the chemotherapy delivery systems until 5/7.  She will, of course, continue to get radiation doses Monday through Friday until the treatment ends (33 doses are on the schedule).  She also gets accupuncture every weekday, and both days this weekend as well.  The Chinese accupuncture is intended to reduce the side effects of the chemotherapy, and a Japanese method is used to reduce the radiation side effects.  The latter was developed to help people affected by the Hiroshima/Nagasaki nuclear bombings.

The nausea is pretty bad today, and she can't stand the thought/look/odor of food.  Hopefully that will subside in a day or so.

Every part of the process involves a complicated set of tradeoffs.

One way or another, we'll keep you informed.

Peter