Started radiation treatments last Wednesday and had my one cycle of chemo with radiation yesterday. Because of my allergic reaction last time, I was given extra Benadryl and after 3 hours at the Center and grocery shopping, I fell asleep in my recliner and slept ’til late afternoon! Woke up this morning feeling fantastic. That should last until Monday?

However, it has been an interesting week. I see the dentist regularly but found out on Monday that I will have to have a tooth pulled ( a cavity developing quickly under a crown) and I will have to fit that in with chemo. Ugh.

After Christmas, I will have two cycles of much more intense chemo with a three week wait in between and an evaluation to see how it worked.

What I am finding incredible is that the more open I am, the more outgoing – the more responsive and kind people are. Hugs seem to be the norm along with kind words, healthy curiosity and sharing. There is so much new information every day that being as open as possible at least alerts everyone to options they may not even know exist – not only about treatment but about sources for well being and emotional healing – as well as hints for health and comfort.

Once more, I am overwhelmed by the kindness of family and friends and cannot even express how much their support has meant to me.

I may not post until after Christmas – so, I m wishing you all Merry Christmas, a Happy Hanukkah and a wonderful New year!

Lisa

The PET scan indicated that all areas responded to radiation and chemo . . . nodules smaller, activity lessened, etc. so the treatment is working. There is still a lymph node between the lungs showing some activity and because there are small nodules in the lower lobe and two larger nodules in the upper lobe the entire lung would have to be removed surgically . . . and there is no guarantee they would be able to remove all traces because they would have to be looking at all the lymph nodes as well . . . oncologist and radiologist recommending one more cycle of chemo and 8-10 additional days of radiation targeting the now smaller area. After chemo there is targeted therapy for this particular type of cancer. Not sure what that will involve since I have not spoken with the oncologist yet – but treatment begins again next week.

Well, here we go. It’s been nice having this break and I am hoping that I’ll be feeling okay for Christmas. My hair is even thinner – think Larry King. Actually pretty funny looking. Glad I found a couple of knit caps that are more comfortable than the wigs!

Did have the PET scan yesterday and did meet with the thoracic surgeon. Surgeon, radiologist, oncologist, and maybe even the gynecologist will discuss options and then present me with “the plan.” Admit to being a little anxious. Still feel “urpy” which could be either from the chemo or the radiation treatment. Although the surgeon looked over the scan he said it needs to be read by the radiology department to insure that they know what has happened during my course of treatment. I do know that several of the nodules are smaller in size. I will probably know before mid next week.

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!

Well, 8 radiation treatments and two chemo infusions and here I am.  It has been an interesting week.

Starting on Friday I had mild nausea which  became progressively more bothersome.  Never to the point of vomiting but smells and tastes and even some pictures of food upset my stomach.  I researched – found out that the chemo drugs I am taking this time are much more likely to cause these problems.  I also found out that I may have been inadvertently medicating myself for nausea   . . .  last winter I began having severe panic attacks.  I was prescribed Lorazepam with instructions to use 1/2 milligram as needed for attack.  (An aside – 30 years ago I had my first panic attacks and was diagnosed with proctitis at the same time – this time I was diagnosed with panic attacks and ulcerative colitis.  Autoimmune.  “Should have been on meds all these years”- despite not having ANY symptoms.   Long story short – no colitis symptoms since Sept. and anxiety much improved – I believe this had more to do with the fact that I was dosed with an antibiotic in December which according to 23andme I metabolize differently from most of the population and I believe it completely destroyed any “balance” in my digestive bacteria.)   Anyway – I realized I had not used Lorazepam on Thursday and Friday.   Hmmm.  Checked drugs used for nausea during chemotherapy and Lorazepam was right up there.  Once I again started to use a small dose in the morning before confronting those huge, clanking machines –  my nausea also started to subside.  Gross- but fact of life is that constipation is also a problem.  You will notice all the little ads on all the bottles warning about how much and which ones and how often.  Turns out that the darn chemo drugs also slow the motility of your intestines CAUSING this problem even if you’re eating all the bran and roughage in the world.  So – once more a little help is necessary – Milk of Magnesia , teas, and/or Sennekot will now be part of my arsenal as well.  Happy day – I enjoyed a substantial, healthful breakfast before chemo today and  a wonderful, flavorful dinner tonight.  Sigh!  Right now I feel terrific ….

I will have a pulmonary function test on Friday to ascertain if I am able to handle surgery.  Then, the plan goes from there.

Todays chemo was three hours long – I am receiving anti emetics and steroids as well as Benadryl to counteract any allergic responses and to hopefully  help with nausea.  Using a port is causing this to be so much simpler and less uncomfortable than before – numb, poke, draw blood for tests, attach IV bags, begin therapy.  Done and done.  My new I Pad got me through waiting for the radiologist’s appointment as well as the three hours of chemo – THANKS YOU THREE KIDS!!!!!!!

So . . . so much to be thankful for.  Feeling good.  A wonderful therapy dog who visits us on Wednesdays.  Wonderful meals cooked by wonderful people. A kind and thoughtful husband who is always trying to help. An Oregon yeti footprint to stamp out SFC.  The moose who’s turned into a lap cat.  Kids who surprised me to tears and continue to pop in and out.  Wonderful books on healing.  The continued prayers and wishes  of so many people who mean so much to me from every part of my life.   At this moment I really do feel great.  Everything you have done has helped me feel positive.  Thank you for helping me heal.

I have had this discussion since  I was in high school and decided strong words should be used when strong feelings are expressed – they loose their currency when flung about with abandon.  And so, although I have been known to use them on occasion, they still grate.  However- we always used to dance around the word cancer.  Some people would not even utter the work and whispered when someone contracted it.  We can’t do that anymore – we have to shout and share and  acknowledge so that we can help any and everyone get through this and know they are not alone. Words get attention.  This awful group of illnesses needs all the attention it can get.

Two years ago I decided to take spring break to get all my appointments in order.  Turned 65 so signed up for Medicare.  Saw the eye doctor and learned I have the start of cataracts.  Saw the gynecologist who declared tests and a D&C were necessary – scheduled that Friday so I wouldn’t miss work.  Got my two month late mammogram,  Wham.  World tilt.   They wanted to do a biopsy immediately, my doctor said he wanted to see me first, he saw the results – I got the biopsy.  So the next week the doctor calls and tells me I should consider scheduling a prophylactic hysterectomy because of a thickening of the uterine lining and a slight irregularity in cells.  I will call.  He calls back and tells me I have breast cancer.  Small tumor, Triple Negative – a type of cancer most frequent in  young African/American  women – not hormone receptive – not expected-  which is aggressive and I need to get a surgeon.  He also said ‘”fuck cancer.” ” I had non hodgkins lymphoma and here I am. ”    (And the word struck the right note in those circumstances.)  And he proceeded to tell me his story and that I need to fight.  I lined up all the doctors, consulted two oncologists for opinions and lined up the radiologist after I had contacted the surgeon.  Needed only a lumpectomy with two sentinel lymph nodes removed Not affected), localized radiation through a Savi port and cycles of chemo . . . would lose my hair, etc.  OK – they said girls continued to work while doing child care.  I decided to work and share my story with my associates and some of the story with my kid with their parents permission.  Best thing I ever did.  Preadolescent and teenage boys in a treatment center and not one unkind remark.  Some prayed for me at home with their families.  I was teaching summer school – four shortened  days a week – and felt this would work. Work was hard when it became full time again.  Got through it all.  Had some chemo brain.  Had a few uncomfortable days – but it wasn’t so bad.  Check-ups with a scare here and there but in August it had been two years since my last chemo- my hair was shoulder length – and I could put it up again.  Feeling good!

Labor Day I felt like I was breathing in a green house.  Didn’t think that was right and saw Dr.  Got a Z pack for the lungs and a prescription for a chest x-ray since I had had breast cancer – just checking.  Then a contrast CT scan- then a lung biopsy for several nodules in my left lung.

Adenocarcinoma.  Often found in women and NON SMOKERS.  Go figure.  Pet scan and MRI followed.  Okay except for flare in lymph gland on right side and several nodules in left lung .  All small.  Here we go again.  I started radiation on Monday and chemo on Tuesday.  Will have six weeks of daily radiation and weekly chemo – with the possibility of surgery and perhaps three more cycles of chemo thrown in after.     By the way, the original symptom cleared up with the Z pack.  Just lucky again.   Something caught early.  And last week my radiologist and oncologist both cautiously, optimistically used the word  “cure.”  Interesting, but my genetics are getting me into trouble.

And so, I have begun again.  A port was placed last week for chemo infusions since they are not able to use my right side due to two lymph nodes being gone – and the veins in my left hand are very unhappy because of the chemo there- was not a comfortable procedure but feeling better this week.  I was able to go to my 50th hight school reunion on Saturday and spent Sunday at a farm and grilling with the family – all of whom overwhelmed me with support.

My sister kindly took me to my first radiation appointment on Monday.  I had radiation and chemo on Tuesday and after radiation today I am feeling pretty good.  I haven’t told a lot of people.I am grateful for the support I have received from them.  I am just putting this out their for those of you who have an interest – and to keep the word out there that there are things that can be done,  Fight early and fight hard.  I f you feel you want to pass this one on, please do so