Today another trip to Johns Hopkins. First an appointment with the speech therapist, who says the difficulties I’m experiencing with eating and dry mouth are all related to lack of saliva. All hope is not yet gone–there is an acupuncturist who used to work as an oncologist we will be in touch with, and time has not yet run out on recovery of salivary gland function. Plus, it was very affirming for me to hear that the symptoms are real and have a source outside my own madness.

Then the really great news. We saw the radiation oncologist and the chemotherapy oncologist. They looked at the PET scan and into my throat with a laproscopic imaging device and they both feel that the tumor is gone, no activity! There is still healing/damage in the back of the throat, base of the tongue, bottom of the ear canal, and there is some scarring at the top of the lungs, but they don’t need to see me for six more months! It’s done! They feel confident that the cancer is gone!

And, we have crocus, forsythia, and daffodils blooming in the yard. Timing is everything.

The morning after our anniversary party I passed out, cold, in the bathroom–and NOT from drinking, darn it! So the next day, Monday, I called my GP and she ran some blood work etc. and decided that it was low blood pressure and prescribed lots of salt and liquids. The next day I was due for my big barium swallowing exam at JH. I passed with a “C”–normal for someone who has been through the radiation I’ve been through, impaired from actual normal function. But I can swallow and I am moving more and more into solid foods. I have had to give up on the idea that I would go back to work part-time on Monday for a full week. Instead, Beth will drive me in for a 4-hr. day Tues. and Thurs. and we’ll see how that goes.If its good, we’ll try three days the next week and maybe I’ll be on my own by late Feb. In the meantime, I am working from home a few hours a day to get the feel of it. As usual, progress but SO SLOW.

I gained 5.5 lbs. in the past week. Obsessive calorie counting gets the credit. So, no new holes punched and no tubes added. The doc thinks it may take another week or two before the mouth and throat sores go and the taste buds begin to function again, so eating is still a chore, but at least it works, and its not beige liquids! Another doctor (radiation oncologist) on Thursday, and the trips to Baltimore begin to slow down, finally. whew.

We’ve gotten lax with keeping the blog up-to-date…I think its a sign that the feeling of disaster is abating and a more “normal” pace is taking over. Tomorrow I have the big test; did I lose weight during the past week as I have plotted and added each “meal’s” calories? Really, the major item has been “shakes” made with whole milk, dry milk, whey protein, canola oil, and Carnation Instant Breakfast…with some sort of fruit thrown in. Happily, the sores in my mouth and throat are moving into an area that can be numbed with Lidocaine mouthwash, so it is much less painful to put these concoctions down the hatch. If I pass tomorrow, no more threat of tube feeding! It must be a good sign that I’d rather take food by mouth; I remember being happy to have the tube for feeding last fall. Anyway, update tomorrow about whether calorie counting can be a good tool for putting on weight!

Today was another Hopkins run, this time for red blood transfusions. The first good news was that I had gained a little more than a pound since Monday. I am very carefully tracking the calories and working to make sure they tally up to the figures set by the nutritionist, and it is gratifying to feel that its working. Eating is not easy but it beats being hooked to a feeding tube at this point–enough pale beige liquid for one lifetime, I think. Plus I feel much better off the enteric liquids. So, since we were away from home for six hours in the middle of the day and I couldn’t make a lunch smoothie, I had to snack a bit when we got home to get the calorie count up…and I decided to try some Pepperidge Farm Milano cookies, mostly because they are fairly soft and have a hearty calorie number. They went in! First solid food for months! Yes, it hurt, but they did go down. Here’s to incremental improvements

Beginning with the New Year, I have been taking in my nutrition and fluid by mouth. In all honesty, this is due as much to the fact that my feeding tube no longer fits, and rather than putting whatever is in the gravity bag into my stomach,the contents get dribbled across my stomach, onto the bed or chair I’m on, and you get the picture. After a few tries with cleaning up the gooey mess, I decided to brave the sores in my mouth and throat. It turns out that if it cold enough and sufficiently liquid, I can get it down. So, big improvement. Much less toxic than Osmolite 1.2 or DiabetiSource, or so my intestines would have me believe. So, this I have to see as moving forward, and hope that within a week or so the sores may heal and I may move onto semi-solid or (gasp) even solid food. I long for the day when I’ll casually reach for a glass of ice water to quench my thirst, or look a a meal and expect it to taste as good as it smells. But for now, I am liking the freedom from the gravity bag.

The last few weeks have definitely been the most challenging from the point of view of energy, or more accurately, the lack of it. I am shocked at how depleted I am. In some ways it is good to be completely in synch with the snow-covered frozen landscape I see beyond the windows…I am glad to be facing my need for rest together with the season. Although the medical team doesn’t seem alarmed, I work hard to maintain belief that this will pass and I will once again eat, drink, and have vital energy. In the meantime, I take pleasure where I find it…warm feet, a comfortable home with Beth, two silly cuddly dogs.

I just have to take time, even though it is past midnight, to go on here and say what amazing family and friends we have! I am stunned by the outpouring of love, support, dinners for Beth, walks for the doggies, and help with keeping our bits of land in shape…and then, when we are too lame and exhausted to go online with the news, even blogging! here is a photo of the family visit this past weekend.

Linda and Wendy SAVED THE ORGANIC GARDEN!!! YEA! HOORAY! And now Beth doesn’t have Cathy nagging and worrying about pulling up the beans and planting the rye! (You’d think she might have other things to worry about, but no, this one was a real major bugaroo.) I admit it.

Today was a tough day–we went to see my neurologist to find out if I am really losing my mind, or just having chemo brain. Luckily, it seems to be the latter. Then during the radiation treatment I felt a low insulin episode coming on, but it’s only me and the radiation there in that room, so by the time the technologist came in too unbolt me from the tray, I was drenched with perspiration and not exhibiting much “there” there. Luckily the tech immediately reacted, and hauled me off to the nurses’ station, where it took some fast talking to keep them from admitting me to the hospital (my sugar was at 29, and they see death and coma at 30). But in the ensuing discussion with the doctor, the radiation nurse, the nutritionist/endocrinologist, and another nurse, Beth and I discovered that we’ve done really well trying to manage a terribly f**** situation, and that our teamwork is very good…even though we can’t solve all the math, neither can they!

Well, if we can keep me alive through six more radiations and two more chemo, we can begin the climb back up the hill to health. Can’t happen too soon. Here is another picture of the weekend past:I’m sure Tiana was figuring out exactly what goes into the food on her plate and will be making it for us all. Wendy likes it!

Anyway, this is supposed to be a rave about the amazingly giving and loving people who surround us, both near and far, and how much that fills my heart with the will to grind through so there will be many more opportunities to laugh and eat and drink together!

Ben got to ring the bell last Friday!

He has been upbeat and inspiring all along the way, even as his neck turned deep burgundy and he lost all sense of taste. His wife (on the left) brought balloons and we all  cheered while he rang the bell!

We wish him well and hope to meet for couscous when we’re all eating again!