Re: Bad News August 2006
Well there doesn’t seem to be any easy way to introduce this so here goes – I have a lump – failed my mammogram and sonogram tests and am having the lump removed on Monday. I’m expecting to be home at 3 pm but hopefully stoned to the max, however Gene can let you know how it went...Last time they gave me the anesthesia that they plan to use I apparently sang “I’m a little teapot” all the way home. (And I really, really can’t sing!!)
The pathology report will be back on Thursday and we are sort of assuming I will be getting a mastectomy after that-Though this could just be wrong.
This first part will take place at Liberty Hospital -- day surgery and then I will be following up with them – the best community cancer hospital around. I don't want to have to travel too far. The VA will pick up that part – they couldn’t get a quick surgery appointment so the private insurance will have to cover that. I am really blessed that I have so many options.
I will also have a VA oncologist giving me her 2nd opinion on any choices I have to make on my treatment options. It is sometimes good to be retired military.
Robert, my former boss, will tell you that I have the ability to terrify the stuff right outa here but all prayers are gratefully accepted! Meanwhile I will try to be my most intimidating in that direction.
Gene really understands me. I was in the recovery room and I asked him how it went. He told me that it was cancer and the surgeon couldn't get all of it. Apparently, at this point the recovery room nurses gave him such evil looks, that if looks could kill he was French fried. But I am the kind of person that really wants to know what is going on. I wasn't even a little surprised.
Re: The rest of the news
Well, no good way to tell this so I will dive right in. I do have cancer - spent the day at the hospital and will probably go back in on Friday or Monday for a mastectomy.
I have a great medical team - my General practitioner and my Dr at the VA - the VA has contracted to have me treated at the Kansas University Medical Center at my request - they are doing tons of research on breast cancer there and can offer everything possible.
I have a VA oncologist to give me 2nd opinions on every decision. The surgeon I am using is very gifted and he is doing the surgeries at Liberty Hospital fairly close to home.
All prayers cheerfully accepted. I love you and hope you know how much you mean to me. Try not to worry too much - I am a tough old bird, you know.
Love, Lori
Re: I was right
Hi all – I have the left mastectomy on Monday. I’ll send along the info on the HER2 and lymph nodes when they get done. Thanks!
Love, Lori
Update 1
Hello All,
Well, had the mastectomy yesterday and now I am home. Won’t know the stage until the lymph node tests come back. Today they also figured out that I have diabetes – so the diet I keep talking about is now a go. But I am working my way through the alphabet – Antibiotics, Breast Cancer, Diabetes, Erythromycin allergy, Flatulence, Gas, Hair Loss, Impudence……
I’m in a pretty good place but I really freaked out a social worker today. He was discussing advanced directives (living wills) and durable power of attorneys – which over ride a living will….so I said, “so that means no matter what I said they can keep beating a dead horse?” I think he wanted to run away! But the nurse laughed.
I like my surgeon - he reminds me of Doug H*. Hopefully I will know by Thursday what the lymph nodes are up to and if the cancer has taken up travel and tourism. Then--on the 11th I go to meet with the medical oncologist at Liberty Hospital to figure out the chemo options. They have come a long, long way with the treatments since Mom went through this!
Leah and I went up to the American Cancer society and got to pick out a hat, turban and wig. I have a large head - 23 inches around so it was a challenge but we found some cute things. Leah has such good taste - We had fun. They gave us a ton of information.
Well I have a couple of days to take it easy. Last weekend I helped cater a wedding for my friend Kathy’s daughter – only 125 people. It was fun. We did a cold buffet so it wasn’t too bad.
I’ll keep you updated!
Thanks for all the prayers! Love to all of you!
Lori
Update 2 Re Interpretation of my pathology report
IDC (Invasive Ductal Carcinoma).
This is a cancer that begins in the milk duct but grows into the surrounding normal tissue inside the breast. This is the most common kind of breast cancer.
I don't have this.
Grade: tells you how much the tumor cells look different from normal cells. My cancer is Grade 3.
There are three cancer grades:
Grade 1
(Low Grade or Well Differentiated):
Grade 1 cancer cells still look a lot like normal cells. They are usually slow-growing.
Grade 2
(Intermediate/Moderate Grade or Moderately Differentiated):
Grade 2 cancer cells do not look like normal cells. They are growing somewhat faster than normal cells.
Grade 3
(High Grade or Poorly Differentiated):
Grade 3 cancer cells do not look at all like normal cells. They are fast-growing.
Mine is poorly differentiated.
4. How big is the cancer?
Doctors measure cancers in centimeters (cm). The size of the cancer helps to determine its stage. Size doesn’t tell the whole story. Lymph node status is also important. A small cancer can be very fast-growing. A larger cancer can be a “gentle giant.”
Size: 5.5cm in greatest dimension (specimen #1) and up to 3 cm in greatest dimension (specimen 2) Mine was 5 cm.
5. Has the whole cancer been removed?
When cancer cells are removed from the breast, the surgeon tries to take out the whole cancer with an extra area or “margin” of normal tissue around it. This is to be sure that all of the cancer is removed. The tissue around the very edge of what was removed is called the margin of resection. It is looked at very carefully to see if it is clear of cancer cells.
The pathologist also measures the distance between the cancer cells and the outer edge of the tissue.
Mine had fingers growing out of the lump. The surgeon could not get it all, so I will have a mastectomy.
Positive: Cancer cells come right out to the edge of the tissue. More surgery may be needed.
Positive margins: Report states Carcinoma is "Extended focally to the margin of the excision." in both specimens.
Do the cancer cells have hormone receptors? Hormone receptors are like ears on breast cells that listen to signals from hormones. These signals “turn on” growth in breast cells that have receptors. A cancer is called “ER-positive” if it has receptors for the hormone estrogen. Breast cancers that are either ER-positive or PR-positive, or both, tend to respond well to hormone therapy. These cancers can be treated with medicine that reduces the estrogen in your body. They can also be treated with medicine that keeps estrogen away from the receptors.
ER-positive: a cancer that has estrogen receptors in my case <3%.>
I will have a mastectomy of the left breast on Monday and he will take out the associated lymph nodes. Right now I have no lymphatic or vascular invasion info.
Are there breast cancer cells in your lymph nodes? Having cancer cells in the lymph nodes under your arm is associated with an increased risk of the cancer spreading. Lymph nodes are filters along the lymph fluid channels. Lymph fluid leaves the breast and goes back into the bloodstream. The lymph nodes try to catch and trap cancer cells before they reach other parts of the body. When lymph nodes are free or “clear” of cancer, the test results are called “negative.” If lymph nodes have some cancer cells in them, they are called “positive.” The more lymph nodes have cancer cells in them, the more serious the cancer might be. For this reason, doctors use the number of involved lymph nodes to help make treatment decisions. Doctors also look at the amount of cancer in the lymph nodes. You may see these words describing how much cancer is in each lymph node: microscopic: Only a few cancer cells are in the node. A microscope is needed to find them. gross: There is a lot of cancer in the node. You can see or feel the cancer without a microscope.
Re Update 2B Hello All, Well I had my drain removed and they figured out I had an infection – Guess that "I" letter stood for Infection not Impudence….I’m going into the hospital to get IV antibiotics and hydration. Wednesday I meet with the Chemotherapy doc and then Thursday if I am free I see the surgeon. So I won’t be too close to a laptop since Gene leaves town on Sunday for a week. All prayers gratefully accepted. Love, Lori
Update 3 God Blessings have rained down on me today!!!!!
They took a sample of 16 lymph nodes and there is NO SIGN of any cancer spread!! And no residual cancer – I still have to go through the oncology process but it is such good news. I was astounded! So was my surgeon -- He had them double check! The lump grew so fast and was so big; we both expected a bad outcome from the test. Gene thinks it is because I moved so fast. Love, Lori
Update 4 Hello All, Here I am at the hospital with no internet but I thought I’d type an update and Gene can send it from home – very snail mail but I guess I can still do that old-fashioned thing! This hospital, Liberty Hospital, is good--- not only in the facilities and talent but in some of the amenities they have. They have a rapid admission hospital room where you get sent so the nurses can work on stuff you need, you can get in bed, and you don’t have to sit in an office contaminating the chairs, people, the waiting rooms and all that. At home I had been running fevers for two days, the oral antibiotic was not doing the trick, I couldn’t eat and when I started to cry (me?) I got really worried. Gene drove me down here and it was a traumatizing experience for him as I was gushing fluids from the drain site. But I got checked in straight away, cleaned up and bandaged. So I get one small IV bag of this tiny powerful antibiotic each day and standard fluids and I will probably be here through tomorrow. I am feeling better. Although just when I get into a really good sleep some chirpy young thing pops in – Like at 4am. Her “Good Morning!” probably accompanied by small Disneyesque canaries and bluebirds singing merrily. Me “no it’s not” Her (a lab tech) “Are you in pain?” and less chirpy. Me “NO – it’s just not morning” Her “OH”. She is lucky I’m in a disabled condition! GRR. Even the military was nice enough to call it O-dark thirty! My daughter-in-law, Dax, suggested I bring a Disneyesque Siamese next time. So I meet with the oncologist on Wednesday at Liberty Hospital – I “fired” KU Medical after they assigned me to a surgeon twice after I had the surgery! Then each time after I explained that I needed a medical oncologist they said "they would call me back on Monday but actually called me back on Wednesday." By then it was a moot point since I had done the research and found one who comes here to Liberty on Wednesdays. They don’t seem to understand that time is an important component in beating this. They may be great but I felt like a tiny frog in their huge ocean.
I doubt we will start chemo until after the infection is gone – but since the lymph node tests (16 of them) all came back clear, I figure that they will start chemotherapy and if the HER tests come back positive they do a growth inhibiter chemo for that. It is amazing how far they have come.
Dr Garstang, my General Health doc at Liberty Clinic, is my hero in this. He has kept an eye on my general health and he has hooked me up with really good people and done it at high speed and without errors. And I always forget to tell him that the speed with which he helped me find a surgeon and got me in to see him is probably why a really fast growing aggressive cancer did not spread. God Bless Him!
And I really appreciate your prayers – Hearing one or two of you on the line must have been attention getting in Heaven but then the volume got really deafening – Like the “It’s a Wonderful Life” movie. Thank you. When I was being checked in they asked me (under the category of stress relief and support) about my faith and I burst into tears and said that so many people were praying and that really helped. I love you all! Lori
Update 5 Hello all, I am home! At the moment I am taking it easy and kicking back. The weather is lovely here at the moment. I had a staff infection and yuk! So far that was the worst of all of it. But some time and IV antibiotics kicked back the infection and I am much better if tired. Emotionally I am ragged. I never cry (once when Ryan's Grandmother died - Ryan was about 10, I did and he told me that he didn't think I knew how) and right now anything sets me off. I feel really unstable – usually I am the first to leap at any windmill/challenge that needs to be fought but now with the VA giving me a hard time, all I can do is cry. We met with the medical oncologist, Dr. Jamie Bridger. She is so nice. She tells me I am Stage II and after looking it up I think it is stage IIA. Info on the stages can be found here:
http://www.nccn.org/patients/patient_gls/_english/_breast/4_stages.aspNow the lymph nodes’ being clear is a great sign. However, if even one of those cancer cells snuck through, it could lodge anywhere in my body and regroup. Like, in my bones, lungs, or brain. GAk! The ugly word for it: Metastasis/Metastasized: The spread of cancer cells to distant areas of the body through the lymph system or bloodstream. So the goal of the chemotherapy in my case is to kill cancer cells that may have spread to other parts of the body from the original tumor. When chemotherapy is given after surgery to destroy any cancer cells that may still be present, it is called adjuvant therapy.
So I had a choice. Think of myself as cancer free or take a course of chemo to wipe out any wanderers. The study done on two groups – one without chemo and one with – The chemo group had a 20% higher survivor rate. So off to chemo land we go. Right now I am going to take AC – doxorubicin/cyclophosphamide I may get more added when the FISH test comes back. I will go every 2-3 weeks, depending on how I tolerate it and for 4 times. This will take place at the Liberty Hospital right down the road – It is a great hospital.
But they give me a month to heal up first – YEAH!!!! I want to go to the Plaza art show with the family and I would like to visit the Barringers in Illinois. I will have out-patient surgery to have an IV port put in so that I wont have to deal with multiple punctures – It is a real struggle to get an IV in me – My veins hide – it’s the darndest thing, probably one of the few times in my life I have actually practiced avoidance.
I had an echo cardiogram (basically a sonogram of my heart. (Doxorubicin may cause heart damage but this is uncommon in people who do not have preexisting heart disease. If you know you have heart disease or there is concern you might have heart disease, your doctor may suggest special heart tests before you use these drugs and may suggest other chemotherapy drugs if your heart function is impaired.) I wish that I had made Leah take me because I think she would have found it fascinating. She is graduating from her radiology technologist course in December. If the HER2 test follow-up is positive (that pesky FISH thing is positive) it turns out that the treatment for that can damage the heart, too.
And on a lighter note – for the crafty types, here are some links:
http://www.straw.com/cpy/patterns/cot_chenille_boob.html A free pattern for a prosthetic knit boob. Visualize: What are you making? Oh, a boob….
http://www.chemocaps.com/page3.htm This is one for knitted chemo caps.
Here is more general education info for those lucky few that never dealt with this (That’s you, Sister Coffee!)
Cancer is a group of cells that divide quickly and are growing out of control. The word cancer is just a broad name for many different diseases. They all affect your body in different ways. But these diseases have one thing in common: they involve cells growing out of control. Everyone's cancer is different and so is the chemotherapy that is given.
Most chemotherapy drugs are given in one of the following ways:
You might simply swallow a pill. If your chemotherapy is a pill, just swallow it as your doctor prescribes.
Sometimes chemotherapy is given like a flu shot. The shots may be given in your doctor's office, a hospital, a clinic, or at home.
Sometimes drugs are given right into your veins through a needle. This is called an IV (intravenous) injection.
Some people have no side effects at all from chemotherapy. Sometimes, however, chemotherapy will make you feel sick. This is because the drugs being used are very strong. They go after any cell that is quickly dividing, whether it's a cancer cell or not. So some non-cancer cells in the body that divide quickly are also damaged.
cells in your hair (can cause hair loss)
cells in your bone marrow (can cause a tired feeling and higher risk of infection)
cells of the skin and mouth (can cause sores in your mouth and dry skin)
cells in your stomach and intestines (can cause you to feel sick to your stomach)
The good news is that there are things you can do to lessen or to get rid of some of these side effects.
You can take some medicines at the same time as your chemotherapy to prevent vomiting or feeling sick to your stomach.
New drugs called growth factors can be given as injections to help the bone marrow recover from chemotherapy and start making new blood cells.
Transfusions of red blood cells or platelets from blood donors help many people.
Remember that not everyone gets the same chemotherapy drugs. Chemotherapy for some cancers may be much stronger and cause more side effects than other drugs. Also, everybody is different. Your general state of health and fitness will affect how your body reacts to chemotherapy.
Cancer isn't contagious, so you can go on being close to family and friends. Having chemotherapy won't "rub off" on anybody else either. Depending on how your body reacts to the treatment drugs, people may not notice you are on chemotherapy at all. If you do get unpleasant side effects, your family and friends can do things to help. When someone asks, "How can I help?" have a few suggestions ready.
You may not feel like eating very much, so ask family members to take turns cooking foods that you feel you can eat.
You might get tired after each treatment and need extra rest. Ask your family to do little jobs for you until you feel better.
Remember that your family cares very much about you, and they may feel nervous about your chemotherapy. Let your family and friends know how much their support means to you. Be honest about how you feel. Get into the habit of talking things over with your family and friends so they can share your ups and downs.
There will be times when the people closest to you also feel tired or sad, and you can help them feel better by reminding them how much you value their help.
I love you all! Thank you for the cards and flowers. They cheer me up! I suggest you go to the online nurseries and send a hosta or a fern for the shade garden – I’m filling it in slowly and plan to enjoy it for a long time – It’s cheaper for you, too.
I have cancer, I have challenges, I also have friends, the best man in the world at my side, children, family, and wonderful memories. I am blessed and you are part of that!
Love,
Lori
Update 6
Hello all,
Several new people actually asked to be added to the update – Welcome to all of you! Tina H*, John P*, and Lionel B* are joining the group. Welcome back to the U.S., Barb – she was in Slovenia and Croatia and Venice!
I ordered my new Medic alert bracelet – It has all the Hypertension, Diabetes, and cancer, but also a line that says “It could be worse!” -that way the medics know who they are dealing with!
I’ve had my 2nd opinion doctor visit, which didn’t change the basic plan but did give me some questions to ask – so it is all good. Dr B*was far gloomier in her prognosis (she thinks I am stage III rather than IIA) but the VA does give me a fall back position and a place to have some of the more costly tests done. She put in an order for the genetic testing I want done, too – for the sake of my daughter and sisters. If I get it done, it will only cost them $300 for the test if I have it done – initial test is $3000 - With the VA treating its win-win all around. So any kin that want to get tested – come on out!
I also had a bone scan and chest/abdomen scan done to establish a base line and to establish that nothing else is going on. So far, so good. My echo-cardiogram was good, strong heart helps with the chemo.
I also figured out that I had to jump on some dental work because one of the other side effects is mouth and gum problems. So I had a cleaning done and I have one tooth to be repaired on Monday – and since I can’t floss I got a new sonic toothbrush (tickles!) and some weird toothpaste and mouthwash. Must remember to brush in the morning after breakfast because you can’t eat or drink for 30 minutes after.
Today I had a IV port put in for the chemo – this will save a lot of trouble – since they have the dandiest time putting an IV in my veins. I’m really sore at the moment but came through ok.
Here is the educational bit for those of you interested. Keep the prayers coming!
Intravenous therapy or IV therapy is the administration of liquid substances directly into a vein. It can be intermittent or continuous; continuous administration is called an intravenous drip. The word intravenous simply means "within a vein", but is most commonly used to refer to IV therapy.
A port is similar to other long-term IV lines; however, the entire device is buried under the skin. Ports allow a soft IV catheter and are generally used in patients who require IV access for more than 3 months. A Port is placed directly into a central vein, usually in the neck or upper chest. The catheter proceeds to a position just above the heart. The catheter is then tunneled under the skin and the port is then secured against the chest wall through a separate incision (usually 1 to 2 inches in length). Each time the device is needed, it must be accessed via a special needle (Huber needle). Due to its design, there is a very low infection risk, as the breach of skin integrity is never larger than the caliber of the needle.
Love to you all!
P.S. The VA is a pain but I have great insurance through Gene’s job – expensive but it gives me options. I am using the VA system as a 2nd opinion source and for some of the more expensive testing options. Last Friday they did a bone scan and a chest and abdomen scan. They are also going to pay for the genetic testing for me which is a blessing for me and my daughter, Leah.
I had a port put in yesterday and I think I start Chemo next Thursday. I’m sore but doing ok – found out that teeth and gums can be a problem so I am rushing to get any work I need done. Guess the chance of an infection during chemo is a worry. Fortunately my dentist has 2 cancer survivors in his office so he has kept really up to date.
Love back at you!, Lori
Update 7
Hello All,
Well, Chemo starts on Wednesday. I hope that I'll feel well enough by Saturday to let you all know how it went. The next day, I go back to get my Neulasta shot -Neulasta® (pegfilgrastim) is prescribed to reduce the risk of infection (initially marked by fever) in patients with some tumors receiving chemotherapy that may decrease the number of infection-fighting white blood cells. Neulasta® helps provide protection with just 1 injection per cycle of chemotherapy. It is given 24 hours after chemotherapy is administered.
I remember Mom’s Chemo when she had it in the 90’s and it was bad – so I admit to being scared. I also am really bothered by losing my eyebrows and eyelashes – those cells being fast growers that chemo also destroys. But I have wigs and scarves and hats so I’ll survive. And the good news…I may only have 2 months of Chemo.
Well, I can’t tell you how much you all mean to me and your encouragement means so much. Thank you all,
Love,
Lori
Background Education: Chemotherapy works by killing fast-growing cancer cells. Unfortunately, chemotherapy can’t tell the difference between cancer cells and fast-growing healthy cells, including red and white blood cells. As a result, one of the most serious potential side effects of many types of chemotherapy is a low white blood cell count.1,4,5 Chemotherapy that causes this side effect is described as myelosuppressive (my-eh-low-suh-PRESS-iv), because it suppresses your production of white blood cells. A low white blood cell count - also known as "neutropenia" (new-tro-pee-nee-uh) - can put some patients at risk for severe infections and interruptions in cancer treatment.1-3 In fact, complications associated with a low white blood cell count are the most common causes of dose reductions or delays in chemotherapy.6-8 Neulasta® is one way to support your natural defenses.
update # 8
Dear all, First off, 6 people ran in Race for the Cure with my name on theirshirt - My friend in Colorado, Trish and her daughter, Sarah and 4 fromGene's company, Pepperweed. Thank you so much!Chemo sucks and I am tired. But I feel ok finally today. I probably won't write much in the next few weeks. No I don't have inflammatory Breast Cancer. I am stage IIA. Here is a pamphlet with a lot of info and too many ads but it is pretty good.
http://www.selfbch.com/selfbch/bch2006/Love, Lori
Copyright Reader's Digest
Re Update 9
Hello,
I've been doing some thinking lately on the nature of courage. A lot of the cards I get mention courage and I'm kind of wondering what that means in terms of me.
So granted, I'm trying to share my learning process and keep you in touch - God forbid that any of you will need it, but I don't think that has any courage attached. Just sort of the feeling if I go through this we might as well get what we can out of it.
And whining to you all - "Why me?" and "But I don't want to die" or "I'm not ready".....Well, Duh - yes Ryan. I told you that phrase is too rude for words.... And would anything change? I really have the ability to throw a world class, high-speed, histrionic, long and loud fit - full of cuss-words and multi-syllabic hyperbole that would scare people and probably make me famous (re: Streisand). Heck, show me it would bring about a cure and I'll give being a diva a shot.
Besides, between me and all of you who know me well: Why not me? I know I try my best to be the best person I can be and I love you all for not reminding often of how often I have failed you -- and the closer you are the more spectacular the failures - check with family and exes if you have a spare decade! (And even scarier, all my exes are being nice to me! EEK, that seems ominous) but I try and fail, learn the lessons and try again. I have strength and the ability to survive, I am not alone, I have great health coverage (Heck the insurance company calls and suggests stuff! - We've got the heartless insurance on the run) and most importantly I have all of you. You probably don't feel like you have done much but all of you check in every couple of weeks and so I hear from someone every day. That matters (Well, not when I'm retching but most of the time)
But all anyone can do is the next thing -- maybe that is some kind of courage.
Believe me; if submerging my self in the cellar in mushroom compost or in my closet in fermented shark cartilage would be effective then I could do that. My mother taught me about just doing the next thing. Not to look too far ahead but just to the next thing. I think that is more about pragmatism and not overloading. And Robin taught me to question everything that a medico says - she did that for Mom and really improved her quality of life.
Of course my survival Statistic is up to 90% now (YIPPEE SKIPPY!!!!) and so we will have reconstruction and figuring out how not to go crazy about survival and recurrence and stuff but for right now we will be just getting through Chemo, side effects and vanity (hair loss). Two weird symptoms - smoke, dust, even in trace amounts send me into sneezing fits. And my sense of taste and smell are excruciatingly sensitive. I had to go to the water company to figure out if our water had something off or if I was hallucinating. Turns out they have an algae problem in microscopic amounts - smells like fertilizer and tasted like dirt to me. And " you shouldn't be able to tell"....and it isn't dangerous.....I'm just happy not to be crazy!
Dad Barringer told Gene a great story about a family in a solidarity move had a head shaving ceremony and then the patient didn't lose her hair. Teehee. So Leah and Ryan asked Gene in small voices if He thought I would like them to shave their heads (cause the hair, eyelashes and brows and all else are gonna go) Gene had already brought up the idea and here is the definitive answer:
Good Lord, NO!!!!!!!!!!I have to look at you guys!!!!!
Kid's response "Boy, we love Mom!" At least I won't have the same problem as My Mom who lost the hair on her head and Still had to shave her LEGS! Jeez!
Is courage having a sense of humor? I am definitely either courageous or crazy!
Now what is really, really frustrating me is the diabetes - since the chemo counteracts my glucose level gains (Normal is 80 to 130) with numbers like 300! Very frustrating! > They give me steroids with the anti nausea drugs on chemo day - Which pegs the glucose meter and has me banging around like a moped with a flat tire on Hi-test --Zoom, zoom, thump......Zing, zing, badabump. But I try to say: Be patient; self (yeah, even the self giggles at that) I WANT PATIENCE NOW, LORD!
Nope, what I really, really want is to throw a big rock directly at the forehead of the Sugar Plum Fairy -- THWOCK. Okay - not the fairy that it would traumatize children to see rocked:
But I found an artist that captured my nemesis rather well - you may have to enlarge to get the full effect. And if you took your children to see this one - well, the kiddies had better be grown up or have therapists:
So I won't cause an international incident - One of the Russian ballet companies are performing here this Christmas but I will be visualizing......Thwock!
Love to all! Lori
Subject: Update # 11
Well, crap, I'm in the hospital again. And had the worst ever procedure- fast push contrast lung test - Pain has a new defining point and I really was not looking for another stay in the hospital. My White blood count went way down and they think I had a mild infection. Said procedure was to determine if I had a blood clot in my lungs. Nuff said? Yeah, that's what I thought! I didn't have a clot though.
And it could be worse - I could need to wear diapers like somebody's dog does! Mike?
But I am HOME today and my white cell count is way up again to Normal. 7000! Yippee Skippy!
Now, God forbid, but if someone else you love has a medical issue? This is a blatantly commercial interruption: You want to buy a big gift they will love - let's talk Hospital Gowns for a minute. Moon city and strangulation flasher comes to mind. Ever worn one and tried to walk done a hall? It is far worse than the mechanic's mile of butt crack, believe you, me! Might be a pleasant sight if you are 20 but at 50ish -- Ick!
Well, check out this website:
https://www.spirited-sisters.com/index.php - They have lovely, albeit at $100, pricey hospital clothing. Gene got me one of the tops. They have soft closures all over, POCKETS, roomy sleeves that roll up easily, and nice soft backs that actually close. No metal so they can be worn to any procedure - they use frogs for front closure.
Now I had my kids at teaching hospitals and by the time 5 or 6 interns have a gape at your "vjj" while the babies head is crowning - Never mind heard some of the words you know - Well, modesty is not an issue for me. But still for the sake of passersby I try not to expose myself. And some of you may be normal!
This will be great! Sleeves that roll up without cutting off circulation and tied up with a ribbon tie when you have blood donations or blood pressure tests and did I mention interior and exterior pockets? Gene also gifted me an Ipod (Am I a tech geek or what?) and he loads it with story tapes that we get from the Library. But I am SO absentminded that I live in fear I will lose it. I had to get a fluoroscope last time to make sure the port was good and I almost left it on the table in X-ray.
Well, I talked to my doc's about going to Mom and Dad's for Thanksgiving - (Gene had mentioned keeping me in virtual quarantine until next year.....Might be good physically {and I did scare him this time} but talk about going stir crazy! I told him I would stop taking chemo first.) The doctor said "No kissing anyone with a runny nose and rabid hand washing should do the trick." So I guess all the adults will be running around saying "wash your hands" and Dad will add "Do you want to KILL Lori? - I'm not done harassing her!" He worries - sort of a Barringer hobby, far better than a group of rabid golfers, I think! And a sign of how much he loves all of us! But the grandkids are at the runny nose age so I guess no cuddles for me. But Tessa is toddling and that is always so fun to watch.
Update 10 & 12
Hi all,
I skipped 10 so I am recycling my numbers.
I had chemo today and Neulasta tomorrow and then I will go underground for 6 days. So I can be sick to my stomach, sleep and be a bed potato. My sense of small gets acutely sensitive. Poor Gene heated a pizza and the garlic smell was bad. And normally I love garlic. Apparently cooking meat is just as bad. And Gene hates to eat out. Life is hard. I love to eat out and I won't want to eat much of anything for the next week. But I have lost 48 pounds without any effort in the past year. Life is good.
So panic not - I am hibernating - Don't order the lilies yet! We shall overcome. Love to all of you. May your next week be filled with JOY!
Leah, Dad lost a bet to me - so we can go to lunch at the Melting Pot together on the 5th?- He said Led Zeppelin did Free Bird and Sweet home Alabama. Midwesterners should never bet on Southern Rock! It was Lynrd Skynard.
Love, Lori
Subject: Update # 13 Buwahhhahahahah Happy Halloween !
Hello all,
So in years to come, my daughter will tell her friends that one Halloween she shaved her crazy Mother's head. I got very tired of it falling out. Like having haircut itch for a week or two! Other than a bit of dizziness, I am doing fine this time.
So facts on Breast Cancer that I want you to know:
All women are at risk, and it increases with age.
Most women who get breast cancer do NOT have a family history although a family history increases your risk, somewhat.
Just because you do not have a BRCA1 or BRCA2 mutated gene, you can still get breast cancer. About 90 to 95% of women who get breast cancer do NOT have an inherited form of breast cancer or a mutated BRCA1 or BRCA2 gene.
A majority of women diagnosed with breast cancer have NO known risk factors outside of their gender.
Because the cause of breast cancer is not yet fully known, there is NO way to absolutely prevent it. (although the anti estrogen drug tamoxifen can help reduce the risk) EARLY detection and treatment are the keys to surviving.
Mammograms are x-rays of the breasts. You should get them annually after 40. With a family history or any risk factor, you need to talk to your health provider about risk assessment. Call around and find a place that uses the Mammopad! - It makes the procedure less uncomfortable - Tell each place you call that you want to find a place that uses the pad. Customer demand should make this available at every center.
Get a Clinical breast exam every 3 years starting at 20 and annually after 40. This is an exam done by a health care provider, who will carefully examine and document any changes or lumps that may be present - I always did this with my annual GYN exam.
I found my own lump. Breast self exam involves paying attention to your body. If you notice a change from the normal look or feel, go to your health provider. This should start monthly when you are 20+. I always found it easiest to do this in the shower using soapy hands.
Warning signs:
Lump, hard knot, or thickening in any part of breast or underarm.
My Mom's was like a pencil eraser. Mine was a large mushy lump that hardened.
Change in size or shape of breast.
Itchy, scaly sore or rash on nipple
Nipple discharge that starts suddenly
Swelling, warmth, redness or darkening that does not go away
Dimpling or puckering of the skin on your breast
Pulling in of the nipple or other parts of the breast
New pain in one spot that does not go away.
Do not wait and see! Go to a doctor, and if they don't check into it; Go to another.
I am going to survive and thrive because I did not hesitate but rushed right in. That is my personality type but waiting and hoping it isn't anything can kill you. Chose to live, not in fear, but in the joyousness that a good full life brings!
Each and everyone of you would be missed!
Love, Lori
Update 14
Hello,
Well, you know that Weebles wobble but they don't fall down.....Well, I am wobbling and other than one ignominious landing in a laundry basket, don't fall down. But the head whirls that I paid good money for in high school are most annoying. Survivable, but irritating. I am used to charging off on a moments notice and it is really hard to remember, sit up and wait, stand up near bed and wait, walk, and then I am okay.
Well must be the latest lesson in patience. Heavenly Father I want patience NOW.
Ryan was in a school play and it was good. It was called, 'Murder is Habit-forming' and took place in a convent. Ryan played a college student named, appropriately enough, Ryan. One of the other actresses wore one of my wigs, since the ones they had on hand didn't look real. Leah, Ryan and I are going to make some presents for Christmas and bake cookies. We're going to make the dough ahead and freeze it over a few weeks then bake them up.
I have 3 weeks off until my last chemo so that I can go to visit the Barringer family for Thanksgiving. I am really looking forward to that. I hope you all cherish your holiday and enjoy time together!
I love you all,
Lori
Final update for now!
Happy Holidays!
Enjoyed our visit with 2 of the 4 cutest grandkids! We ate well and enjoyed our family time.
I have now finished my last chemo and have moved to the survivor group. I will visit the oncologist every 90 days for checkups and do some medical stuff for the next couple of years but I'm over the chemo phase finally.
And now we have to join the rest of you with not really knowing what happens next. Which is essentially how we live our lives anyway. I am going to try to do my best to get as much enjoyment as possible out of the time left - 5 days or 50 years.
I wish that for you all too. Love Lori
Feb 2007
Hello kinfolk!
Had my last chemo in November and then the eyebrows and lashes fell out. Jeez!
Well, besides our genetic dispensation for quirky humor and wandering interests from OJS, My genetic makeup includes the gene for breast cancer, as you can see. I have already talked to Leah about it. My first degree relatives - sisters and daughter, can get the test for $350 because they will only need the small gene sequence check. At KU Med they will do the test anonymously for $350 or you can use your health insurance. I used the VA. I was not surprised at all but Gene has been blown away by this. Please make sure all our younger generation is made aware of the possibility and consider the test. I did it for sisters and daughters --- and my son, oddly enough.
Well, here is what I am thinking for myself. Since I have a 60% chance of a recurrence by age 70 (page 6), I guess the other breast goes. My ovaries came out in 2005. I think they can do the rebuild at the same time....I'll ask my doc today at my 90 day checkup. It's not all bad though - They use belly fat for the rebuild and even though I have lost a lot of weight I still have a pooch - Wow, boob job and a tummy tuck -- I feel so Hollywood! And I won't feel like I am leaning to the right!
For Leah, we will follow the increased vigilance - she will be followed at KU medical high risk clinic. She will get an annual MRI. They do not recommend removing the ovaries until she is 35 to 40 so she can opt to have children. And that is only if she has the mutation. To quote Ryan, the Hovendicks are all Nazis anyway and their genes probably ran right over Mom's. I do hope so! That would make Roger worthwhile!!
Any way my sisters, Leah, and all of us only have a 50% chance of having the gene - Same as Leah. Leah will have the test at KU and I will pay cash for it so it doesn't effect her future insurance.
There is also a genetic cancer study going on at one of the universities - I'll get the info and I am going to see if they need volunteers.
My health is really good - I have the diabetes and blood pressure under control and the weight continues to come off without any effort - The chemo killed my taste for sweets. And the diabetes diet is a healthy one.
Leah passed the Radiology Technologist Registry!!! She is now Leah RTR, ARRT. As soon as she finishes her Sonogram School she will get a bunch more letters - We are so proud of her.
Ryan graduates in May - I may plan a family gathering if you all could make it sometime this summer and we can celebrate Ryan and Leah! That would be fun! And time goes so fast and I will be 70 any day now! So for those of you who are much, much, much younger - Lets make some plans!
I love you all!
Subject: High Risk Registry
http://medicine2.creighton.edu/edrn-registry/educational.htmlhttp://medicine2.creighton.edu/edrn-registry/registration.htmlI am participating in their family study - They will pay for our genetic testing if you would like to participate - I have volunteered Leah,Ryan, and myself to participate in their family study. It is easy! Just call the 800 number.
The test would be free if you want to participate - only downside is it takes 6-8 weeks to get results but I figure that is not an issue with genetics.
I think this confidential research is our best hope for future generations, so I hope you will chose to participate -
Love Lori
Their Brochure is here:
http://medicine2.creighton.edu/edrn-registry/EDRN%20brochure(final).pdfMarch 2007 - Well, I am a survivor - I have been just coasting and sort of catching my breath. I am healthy....and it seems to be sort of anticlimactic - after all the attention and mobilization of resources and the hanging in there....So what next?
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