Month: November 2014

Some news . . . the radiologist told me last Wednesday that I should meet with the thoracic surgeon and have a PET scan. Even though it is soon after radiation they want to determine progress, etc. at which point the oncologist, radiologist and surgeon will discuss options. That was my last radiation treatment and although I have a slight rash it is nothing that an over-the-counter cream can’t deal with. However, I had started to get a prickly heat type rash on my forearms, upper arms and forehead and he said to be sure to tell the oncologist. Chemo was scheduled that day. The oncologist told the nurse to start the saline drip and he would check it out. Apparently I had an allergic reaction to one of the chemo drugs. (He asked if the rash was anywhere else – small dots appeared on my legs that afternoon) So – he announced there would be no chemo that day nor would I have another one until the decision about surgery was sorted out – again, apparently giving my body a little time to heal. Drip was changed to Benadryl and I went home with a steroid prescription and glad that I would not be having treatment for awhile.

Then everything moved quickly. The thoracic surgeon’s office called and an appointment was scheduled for Wednesday. The radiologist’s  office called and the PET scan was scheduled for Wednesday and my appointment for the oncologist to check my rash is on Wednesday. Busy day.

Nothing will happen until all of the doctor’s meet, discuss the PET scan and then present me with my options. Surgery – two more cycles of chemo and radiation – time frame – and then I get to make the decision about those options – and, I suppose, whatever else  might be possible..

Right now I feel very good. If you saw the Thanksgiving picture of myself and Alex – that is what is left of my own hair. If there is a backlight, you can see through it – just the really white strands are left all over my head. If I left it standing up with the elastic and a bow I could be Cindy Lou Who. Oh, well, I found a couple of really cute hats which seem more comfortable than the wigs right now. I am not itching because the meds are working, I was  able to enjoy a really wonderful Thanksgiving at my son’s house and I am looking forward to a few weeks of “normalcy.” Life is good!!!

Here is some of the information we’ve been waiting for. Spoke with the radiologist yesterday and the oncologist today. They still have to confer with each other and the thoracic surgeon. But, as it stands now . . .

The radiologist said my pulmonary function report was okay . . . minor issues but this discussion will continue. (This had worried me – I have always been a shallow breather.) He checked my lungs yesterday morning and they are clear. He asked me to remind my oncologist they they needed to have a discussion ( they are across a lobby from each other and in and out of each other’s offices.)

Today I had my fifth chemo. Counts are a little low in several areas but not at any levels to cause appreciable alarm Still have enough cells to “fight with.”

The oncologist said that I will complete my six cycles of chemo and radiation. I will take a month off to heal. A PET scan will be done at that time to ascertain how well this regime has worked. Discussions will continue with all doctors and he reminded me very gently how serious thoracic surgery is – and just as gently suggested I not Google too much because it can be fairly frightening. (Jim, I do not want my computer to locate “Cute Overload” everytime I do a search – really, I’ll be fine) There is also the mention of two more rounds of chemo. This is all a lesson on what one forgets when one discusses issues of this magnitude.I thought he had said three cycles- he said he had mentioned two – and I wasn’t at all sure about the scheduling of procedures – that if there would be surgery it would definitely be after a break – I didn’t take notes.

Anyway – I also remarked that I thought the hysterectomy seemed like a serious matter which also should be performed in a timely fashion. He agreed. So – I have one and perhaps two surgeries to look forward to . . . and perhaps chemo. I asked the big question – if this regime isn’t working, then what? There is a genetic marker present in the adenocarcinoma which indicated a drug which has been approved within the last couple of years would be a possibility.

And so – there are possibilities . . . and hope . . . and faith . . . .

I asked him if he had any idea why I seem to be handling this as well as I am . . .I am finally sleeping really well, I’m eating well despite my off days, etc. Basically he said that I reacted emotionally, gathered my wits together and faced this head on knowing that I had gotten through the other cancer the same way. I don’t always feel brave. This time I have been able to admit to the problems and discomforts. This is not easy and it is not fun but life is wonderful and so are my family and friends, the pets I know, the yard I love . . . and I want to be here a long time. I have been handed another full time job. Like one of my doctors said – I have been asked to join a club and I am now part of it. Guess I do have to make of it what I want.

And, I have to add, so are the doctors, the technicians  – all the treatment staff at Gavers and Sage Cancer Center in McHenry- representative of the care I would wish everyone to have.  I have complete confidence in them all . . . I am at all times treated like a person  . . .and not an illness.  After my last treatment I wrote the CEO of Centegra because I was so appreciative of the care I received  . . . and received a hand written note from him thanking me and expressing his confidence and faith in his hospital.  Gratitude is also a good thing!!!!

Thought I was hitting my stride and between 1/3 and 1/2 of my hair came out last night. Can still put it up but it’s very thin . . . am glad I saved the wigs so am getting them ready. At least the weather is cold and they won’t feel so uncomfortable. That was a downer. It has felt so good to have long hair once again and to be able to put it up. Just trying to keep focusing on the fact that this too shall pass and it will grow back once more!

Two weeks to go for chemo and radiation. However, next week I should find out if surgery is a possibility and if there may be three more cycles of chemotherapy.

We are down to a pattern. Chemo on Wednesday, three days of feeling okay counting Wednesday , three days of nausea and then okay again until the cycle starts once more. So, the weekend is not too terrific although I am able to eat if I watch when, how much and what. Not very much is all that appealing but I have been enjoying such things as lentils and vegetables so the food I am eating is nourishing. An evening bedtime treat of hot chocolate and Miralax has helped with digestive issues so that is not a problem anymore either. Hope this sees me through the treatment. At this point there has been a slight drop in white cell count – which actually went up again this past week – I’m just two tenths away from normal so I am not in any danger. I am assuming that the last two weeks will be more difficult. The radiation treatment was changed to focus on a smaller area . . . but all of this is supposed to be cumulative.

Once again, Deb and Elsie are keeping me well nourished . I am a very fortunate woman. The children visit regularly and I feel cared for. Life is good.

Three weeks down and three to go – not counting  surgery or extended chemo – both of which are still possible.  Well- not excessively tired or nauseous.  Falling into a pattern.  Radiation every day at 7:45.  Chemo every Wednesday.  Nausea begins late Friday or on Saturday and lasts until Monday night.  So,  a couple of days reprieve here and there.  I have been able to eat so am not having any acute  problems with that.  However, as sure as I was that it wouldn’t bother me – I was wrong – my hair is starting to fall out and it saddens me.  Have so enjoyed having my hair up after so many years of a really short hair cut.  Not sure yet what will happen.  It is not coming out all at once like it did with chemo the last time . . .so maybe I won’t lose it all, maybe it will take a long time . . .all maybes.

Had pulmonary function tests last Friday to determine if surgery is a possibility.  Will be discussing that around the fifth week.  Don’t even know the extent of the surgery yet but feeling less apprehensive as time is going on.  Actually feeling pretty calm about this whole ordeal – considering.    Having a few of the side effects of radiation – sometimes it feels like there is a lump in my throat and swallowing is odd.  That is due to the esophagus also being irradiated and there is some irritation.  The skin on my back is darkening a little.  However, there is no real pain or discomfort.  I do have an occasional cough.  All told, so far so good.  I have been told that effects are cumulative so we’ll just keep on keeping on.

I am feeling incredibly cared for.  Ang’s Mom Debbie and my sister are making sure that I have lots of good food available . . .fewer cooking chores are really appreciated and I am feeling so pampered.  I am enjoying seeing people.  Life is good!