‎4 recent Dr. visits and radiation simulation- prepping me to "Go from the frying pan (being cooked through and through with chemo) into the fire"(being burned through and through with radiation) Starts April 5th.:)

-Jeanie

UPDATE!!!!

I hope everyone can forgive me for not updating Jeanie's blog for a while. Here is a recent email update from Jeanie. Thank you all for your love and support!!!!

Dear Family and Friends,
Before I go into chemo tomorrow, I wanted to send this off. Hope it helps catch you up on us. We are also requesting a family fast for mom and dad for this fast Sunday. We need a united fast to pick us up. I'm about 1/2 way through my trauma year. Thanks for all your support and love.

xoxoxoxoxoxo MOM (Jeanie)

On Fri. the 6^th of Jan., just as I was coming out of my chemo fog, I started to feel a tooth ache in one of my bottom teeth. It has chipped off a lot during chemo time and I think the exposed area got infected as my white blood counts were at their lowest from chemo. I didn’t think much of it, thinking maybe I just had food caught in it or something.

I woke up Sat. with it hurting more and by noon I was having a full on horrific tooth ache. I immediately started hot and cold presses, orajel, some penicillin I still had and anything else I could think of. It just got worse and worse. I am to have NO dental work done during chemo, but I knew something had to be done. I was hoping to hang on till Mon. I did not sleep at ALL Sat. night I was in so much pain. I finally woke Kent at 4 am and he gave me a blessing that allowed me to sleep until 6 a.m. Sunday I was worse and my lower jaw was all swollen. We called our dentist Bishop Chantry and he said he would meet me at 4 pm. That day seemed like an eternity. Two Norco’s every 3 hours were doing nothing. We were so grateful for his emergency service on a Sunday. It was also his wife’s birthday and he promised to make her dinner and a cheese cake. We messed that up. We felt so bad.

He really did not want to do anything invasive, due to chemo, but he knew something had to be done, so he drilled a partial root canal and got lots of infection out. He packed it with medicated gauze and topped it with a temporary filling. We had to call the on call oncologist after, and after several phone calls, got a really super strong antibiotic to take for the tooth. I started it Sun. night and it still took 4 days for the swelling to start going down. I continued to have pain, but NOTHING like the abscess pain. You have to be very careful, because if the infection goes down into your throat etc, it can cause heart damage quickly. Mine was already into my jaw.

Then started the e-mails and contact back and forth from oncologists etc. The oncologists decided immediately that he wanted my chemo scheduled for that Thur.the 12^th to be postponed until infection got taken care of. Then I had to try and further contact him to see what to do with the tooth since it was only temporary. He left that up to the dentist, who sent me to an oral surgeon. Now that is a trick to get a hold of an oral surgeon and to have him fit you in on emergency status. We got in that Thur. and he was so kind and thoughtful. He was willing to do an extraction, but felt it necessary to coordinate with the Oncologist and Dentist first. He tried, but did not get fast results back. We tried and finally they got in touch on Fri., but then we had to call everyone to coordinate surgery etc. We had to get a hold of the dentist to get an impression first, then the Oral surgeon, who works at two offices etc. Of course they were supposed to do all of this for us, but you do what you need to do. You have to be aggressive. We finally got an appointment for surgery Tues., but there was still a question as to all the referrals, and I still went unsure of what he was going to do.

He was so good and professional. My one tooth still had infection in it and it still hurt no matter how much numbing was done- and I must have had 50 plus shots. I did not go under, nor have valium etc. I just did it. The others (5 teeth total extracted) I didn’t even feel though and he was quick and said I was really brave. I have lots of dissolvable stitches. For several hours I felt like I had an abscessed tooth again. There was a hole in my gum, clear down to my bone line. Our home teachers came and I got a blessing. They put me on Norco, but again it was doing nothing. Luckily I got pergacet and it took the worst pain off and I got to sleep. I was on it for three days, then back on Norco. Now I am not on much Norco either, but I still have a very sore jaw and mouth and very sensitive gums- especially the one tooth. I was on cold liquids, then soft foods. I am still pretty much there.

In the meantime, the oncologist rescheduled chemo for Thur. the 19^th. I had to call and reschedule all the infusion and dr. visits etc. It’s a big hassle. He was surprised when I came in Thur. and had only had my teeth out for 2 days, but we also knew that you need to keep up the chemo and not take long breaks or it messes up the purpose of hitting the body fast and furious. Like I said on face book or somewhere, that extra week actually made me anxious and ready to go back to chemo and get it done. I felt rejuvenated as far as cancer went.

Wed. night I had to take 5 steroid pills at night and wake up in the middle of the night and take 5 more before my chemo the next day.

So dad took off Thur. and we spent the day at the cancer center together. We went for lab work at 8 am. I had the good technician who is patient and careful. It still took her 10 min. to find a small vein to get blood, but got it in one poke. I have a port, but have to go to the infusion center for blood taken, because only specially trained people can mess with my port, and I tried that once and they did not do well, then it took them forever and the results didn’t get to the dr. and it was a big hassle.

I had my Dr. visit at 9. I love that staff. I am there nearly an hour because I see the MA, nurse and Dr. each time….each very thorough. I did loose one lb. from three weeks ago Chemo. I’ve only gained 5 lbs. since the beginning of chemo and the average is a 30 lb. gain, so I feel grateful. My blood pressure was great. All my blood work came back really good except my sugar levels. My WBC and Hemoglobin came back up like they are supposed to.

Due to more phone calls and e-mails, I had gone to Dr. Sherwood the same week as my teeth issues to talk to him about blood sugars. They were coming down, but irregularly and not enough. He upped my insulin (I give myself injections daily) and we re-arranged some pills. Still to try and off set the forthcoming chemo. The steroids did wreak havoc as expected and my blood sugar shot up, but not to the dangerous hospital kind, so they could still proceed with infusion. The oncologist also gave me a physical for heart etc. to check if that and other things are going OK. They all tell me how good I look. It makes me happy. He prescribed another medication (up to 21 medications now), to help with different side affects with Taxol.

Off to infusion. I’ve noticed how sick other patients have looked like in infusion, but nothing like I saw on Thur. I guess being there so long, I got to see lots more come and go. Most are in wheelchairs, walkers, or crutches. They are on oxygen. Many are old. They look white, sick. Some were groaning and in such pain. Many are quiet and just move like ghosts. I saw lung cancer and bone cancer patients and a lot that needed IV’s and many who are so much worse than me. It made me so grateful for the health I have and for the blessings I have and that I have a port to put in the chemo.

I had a nurse who was older and straight forward. Not too friendly, but knew her stuff. I’ve had a different nurse each time and talking to another nurse, they really don’t like to do that. In staff meeting, they requested that they have the same patient for relationships, as well as protocol. It’s hard when each one does something a little different, and they each don’t know my exact port etc. They had some troubles with my port and not getting blood drawn back again, but they finally OK’d to do chemo anyway.

So I am on a new chemo drug called Taxol now. (If interested, you can look it up under chemocare.com under Taxol- chemotherapy drugs, chemo Drug side effects) You have 45 min. of pre chemo things they put in you…to help you. Lots of steroids, Benadryl, and other drugs. Then comes the Taxol. This was my first time and allergic reaction is very common, so they had to take vitals a lot etc. Luckily I did fine. I felt really flushed and had to go to the bathroom every 15-30 min. all hooked up etc. Dad helped a lot. The chemo itself takes over 3 hours to go in too. Dad and I visited, had lunch, and did a lot of reading. I went home feeling pretty good. Just tired.

Later that night I had sore shoulders and knees, off balance and very loopy. Also had a wave of depression. Today I am very very tired. Slept most of the day. Still pampering the sore mouth.

Side affects: I am to have very sore joints and feel weaker physically. I am also to have neuropathy, which I have with diabetes anyway, so they gave me the new drug to try and help. Neuropathy is nerve damage. You feel it very much in the hands and legs. Numbness, itching, and pain and sensitivity. I am not to have as much nausea etc., but I had it in the night and morning and had diarrhea again today. (Another common side affect I have had). I also had bad headaches yesterday. So that is where I am for now.

Other status of mom:

Diabetes: Besides the above mentioned things, I still have a lot of other stuff going on. My diabetes is down quite a bit, but still spikes and not constant and not low enough. It’s really a lot of work. Different foods do affect it. My stomach is starting to get really sore from the shots. My three fingers I can use on my left hand are sensitive and sore from the many pricks. Hats off to Cat and others who have it so much worse.

Head: I get headaches on and off, but that is pretty normal for me. Some intense. I also am congested…..praying I don’t get Kent’s cold. I feel like I have fluid in my ears. My jaw and mouth still hurt…especially after eating. I got a bruised chin after the extractions. I can tell it’s going to take a very long time for everything to heal. Earaches quite often.

Chest: This new chemo tends to create swelling and water retention. I have had swelling in feet, ankles etc, but it has affected my chest where I have the edema the most. It’s been very painful several days and feels swollen and hurts a lot. My upper right arm, armpit, part of my back and all of my side are numb and most likely will be forever. Left side is much better, but still has some numbness. I have strange heart pains in my chest too at times. Hope the heart is holding up. Chemo takes a toll on it.

Stomach: Not anything like the other chemo, but feel bloated, have had some diarrhea and other stomach issues. Not too bad of nausea, but throw up in my mouth all the time. Burp all the time and am gassy, which I never have been before. Inards just messed up.

Other: My blood count still goes down and I have several body sores- arm pits, chest, lower stomach, legs etc. Thank heavens for balmax. Really helps…but infection smells and sometimes I feel like my body is rotting away. I also think I now have a UTI and just got over a yeast infection.

I am grateful it is Feb. I am feeling good today, but go in for chemo infusion tomorrow.

Hope this helps know a little more that is going on.

Love,xoxoxo MOM

Cancer Update-By Jeanie

November 4, 2011

My dear family,

Time to do a cancer update to the family.

I had Alicia here for a week and she pretty much summed it up in the e-mail that she sent out. I still think that was my roughest week both physically and mentally. She truly was a miracle and blessing even though she was as sick as she was.

I think most of you have heard at least some about Utah. The one day in Provo was very rough on me and having company was even tiring, but it was an amazing week of rest, being spoiled, and running away from cancer so to speak. It gave me the boost I needed to come back and do more. Grand kids are truly wonderful medicine, as was music, good food, birthday celebrations, seeing family and friends I love etc. Sally gave us money that is helping us survive right now.

I am supposed to get ½ pay, but my paycheck this month was only $39.00. Still have to go talk to them about that.

Cara and Alicia were both SO SICK while they were here. However, Cara also did an amazing job. She did my hair every day, helped me get dressed and took good care of me. We went to a couple of big tests and doctors while she was here. It allowed dad to go to work. She actually got to see the plastic surgeon and oncologist. She rubbed my head and combed my hair over ½ hour one night. She gave me a really good back rub another time. Ahhhh, heaven. She helped me set up a cancer spiral- which has sections for all my meds, dr. etc.

So, here is my latest:

Cat scan. Showed fat in the liver, gall stones, and a hernia….but nothing that needs taking care of now. Good to go for chemo. That test was hard as they accessed my port for the first time and it stung most of the time. I also had to put my right arm over my head- the one that is dead and can not move. That was very painful. Laying flat does the vertigo thing too. Other than that, no biggie.

Echo test. Fun test. Not too uncomfortable. Very interesting to see ultra sound of heart. Lab technician and I were talking and laughing through the whole thing. My heart falls in the normal range and is safe to start Chemo.

Plastic surgeon. Had drains pulled a week ago Monday. Was so excited to get those out. He cut stitches and just pulled and it didn’t hurt. YES. I cried to Cara afterwards in the room because I was so relieved and happy. Showers have steadily felt better- but hard still with my aches and pains. My left side is doing very well. He had to pull out a clip and stitch that worked their way to the surface this week. I have some spots of leakage and it is still trying to heal. It is in very doable pain. The drain on my right side caused a lot of problems and pain and he pulled it out a little early on purpose. After a couple of days I had terrific swelling and pain and we thought it was extra storage of fluid. However, this week he tried to aspirate it and nothing came out. It is actually edema in my tissues. Not good, because that takes forever to subside if it ever does. Right now that is my worst pain. So, can’t go off pain pills yet, and still need lots of ice and pillows. That and lymph node pain is my hardest thing to deal with. Still getting saline pumped in each week. He puts it through a magnetic port and it does not hurt, other than the stretching, pressure and pain. Only have 150 cc left. Not much of a breast and misshaped right now, but that is OK. I have other issues.

Oncology. Went this week and met with him. He answered two pages of questions and was very nice. I am ready to start Chemo as soon as we figure out about the clinical trial I qualify for. We got the 25 pages of paper work. Kent and I each read over it and then had a long discussion about it. We were ready to talk to them at another appt. Thur. But miscommunication really got things messed up. I also went to chemo training on Thur. Another nurse taught it besides my nurse. She was very good about general info and the side affects etc, (took over an hour) but knew nothing specific to my Dr.. or his meds or protocol. We were frustrated last night when the clinical trial lady left a message on my phone that she was in her office all day and did not get messages. I wrote an e-mail to my nurse and Dr.. last night.

Today the nurse called and apologized over and over and answered lots more questions. Then I finally got in touch with the clinical trial woman and we also talked about an hour and went over lots. I feel really good about the trial. I have a 50/50 chance of getting the HER 2 medicine that the trial is about. It adds on 8 months of shots, but my hair can grow back, and I can still start radiation etc. I can also withdraw at any time. It won’t help if I don’t get it and there is no promise it will if I do, but I feel very strongly about paying it forward. That is the least I can do. I will get 10 years of close observation too which isn’t a bad thing at all. I will keep you posted on how that goes. We still have to meet with her and do a bunch of legal stuff, but I could start chemo as early as next week. I will have it every two weeks on my first 4 rounds. Then every week for 12 weeks. So fun…but a 3 week break in-between to recoup.

Well, time for more pain pills and some ice.

Love you all,xoxoxoxoxoox Jeanie (MOMMIE)

The Trial and Journey....

THE AFTERMATH, SCARS & DRAINAGE:
When I first arrived I was very impressed with how good mom looked. She had allot of color and was as vivacious as ever. Her disposition was so temperate of the chaos that consistently surrounds her. She only had positive things to say about everyone and every situation. She kept telling me to hold off my observations until I saw the scars. The first time I saw the double mastectomy scars, stitches and cuts I was not affected in the least. It seemed "normal" in a strange way for some reason and did not worry me, or gross me out. BUT it is far from normal. They cut clear across her body and up the middle. Her skin was smooth and absolutely concave (sorry for the description)--there was nothing left. The good news is all that loss was for some good.When going to the surgeon with mom, the surgeon informed us that she is very meticulous about getting extra skin grafts above and below the actual sight to ensure as they cut/slice and test each tiny piece above and below to ensure that she had indeed gotten out all the cancer. SHE DID! The surgeon said her prognosis was 100% :) . The part that was a little eery to my tummy was the drains. They run on both sides of her body and drain excess fluid and blood from the surgery site. The blood pouches always looked kind of like a pepto bismol solution to me...but then you get use to seeing her cart them around in her pockets. It reminded me so much of when Colton was carting his pee around on his back after one of his kidney surgeries...so it should not have bothered me too badly...but the bloody chunky solution was sometimes too much. She has to drain them at 2 exact times each day and they keep a log on the computer of how much is in them each time. The less the better and means that she will get them out sooner. I went to the plastic surgeon...who is managing that part of her care with her as well-and he felt like keeping the drains in for a bit longer was wise. She has much more fluid the more active she is. She is not allowed to do exercise of any form until they are out. She was nervous about some redness and irritation around one of the drainage sights that had occurred after her 2nd surgery a couple of days before I arrived (to have the port placed directly into her blood line in her chest), But it turned out to be some irritation from the tape and cleaning solution they had used for surgery.
THE DOCTOR VISITS:
The one thing I really appreciated during this visit was meeting some of the doctors whose mom's life is in their hands. I was absolutely impressed with her surgeon. She is a woman doctor who TAKES TONS of TIME with her patients. She got close to mom and answered all her questions (she could tell mom was having a nervous day). She is spunky, lively and certain in her work. She is concerned and really worries about each case. She is the one who would call mom on the weekends and work late hours for her. It could also help that she is a quilter and has a personality too. Mom kept asking what her cancer was staged at...the doctor seemed to want to not classify it necessarily but gladly pulled out the classification sheet- there are MANY MEASUREMENTS and things that goes into the prognosis...but it came back at a stage 3c cancer, the next stage being 4 (the highest rated) according to the American Cancer Society Website--that stage gives you a 49% survival rate for 5 years. Mom made me look that up and at times I regret I did...she is really holding onto that. That is why I think the doctor is hesitant to go about doing it. She only has to see the surgeon now every 6 months. The surgeon told her for the rest of her life all blood draws, blood pressure, etc. has to be done on the left side of her body--the side where the cancer was not as aggressive or in her lymph nodes. The cancer was only detected in the right side lymph-nodes--but it does mean it has entered her blood stream.
The plastic surgeon has a little to be desired in way of bedside manner...he has a dry smile and humor. BUT HE HAS ONE. You can tell he is very educated in his field, and there is no doubt he knows what he is doing. All wounds and dressing care go through him. He pumped the first set of fluids into mom while I was there. People talked about it being painful. so we were leery...but she was fine. So fine in fact, he pumped double the amount he usually does. She fared well despite her narcotics withdrawals :) (more info forthcoming). She is half way the size she is going to be in way of reconstruction--she is not going to be very big--but its not like cosmetic...it is using what you have :) you saw immediate results and was not concave anymore!!! She will be seeing him weekly until she is more healed and pumped full.
The oncologist will oversee her chemo, radiation and all medication. I did not meet him.
THE BAD AND THE UGLY:
By the end of the week mom was 'losing' it on a regular basis. She had anxiety and panic reading, talking or hearing about cancer. It was weird because it seemed to come on so quickly. It was her birthday and she cried through the whole thing hoping it was not her last. She has earned this right to mourn. It is part of the process I am sure...it is hard to not see hope at those moments and allowing her to think about what could be. But those moments are brief as opposed to her moments of HOPE. That is the only option we have. her new MOTTO is HOPE! While I was there mom also had an AWFUL day. She woke up kind of grumpy...she gets that way when the narcotics begin to wear off. BUT by the end of her doctor visit she was pale, throwing up, having tremors, drenched in sweat and cold and clammy. She was having hallucinations between vomiting (at one point I caught her "sewing" with her hands)I spent a majority of the day in doctors office bathrooms...trying to get her into the office to be seen, wheelchairs and all. After seeing an on call surgeon he recommended we go to our family practice doctor (who LOVES mom and dad and talks about his life with them). After a change of clothes (whoever helps her-ALWAYS have a change of underclothes and clothes with you) After listening to her symptoms and recording her narcotic history he was certain she was going through narcotic withdrawals. She was pretty panicked thinking that this might be how chemo will be. IF it IS (which it should not be- with their advancements in nausea) she will need someone with her. She thought her pan medications were as needed basis--so after feeling a little better she went from 10 pills in a 24 hour period to 1 pill in about 12 hours. The results were catastrophic. We learned she has to ween down. We also went home to find out that somewhere between the last surgery, pharmacy and doctors her narcotic levels had been doubled accidentally in her medications-so she was actually taking 20 pills worth of narcotics in a 24 hour period. Now that we know we are bringing her down slowly. They say it is a very natural bodily response to narcotics.
IN CLOSING:
I deep down don't feel like we are going to lose her to this battle. BUT I feel it is going to be a very hard hard road. She needs as much support and love as possible. She cannot be around children during chemo, or ANYONE sick for that matter. It would be wise to get our family in and out of there as much as possible. We absolutely have HOPE. We see a future. We are bunkering down and taking just one day at a time. I know she would LOVE to go wig shopping with some trendy ladies that she is close too, and would LOVE LOVE massages and pedicures. Besides that, CALL HER, bring her bright flowers, happy stories, warm bread and allow her to cry. I love her and hate cancer--but it is and we will ENDURE.

-Update by Jeanie's daughter Alicia

The Beginning

Mom was diagnosed with breast cancer a little over a month ago. She was vigilent in getting yearly mammograms...and had been in for follow-up s a couple of times for lumps-with no outcome. After explaining a recent excperience with a loss of my friend and a growing lump in her breast, she figured she should get it checked out. It came back positive. She has had many blood tests, surgeon visits,nurse visits, doctor visits and tutorials. She owns a HUGE notebook on cancer and its options.She is majoring in cancer. She then had multiple biopsies done as well as a full body scan. The cancer seemed to be contained in one breast. BUT with the type of cancer she was told she had, the risk of it going into the other breast was high. She opted for a double mastectomy with beginning reconstructive surgery on September 26.

The surgery took about five hours at which time they found that the cancer had indeed spread to her lymph nodes on the right side of her body, where the cancer was in the breast. However, they felt as if the tumor was smaller then the original size they had thought from testing. They placed the right implant under her muscle so she could receive radiation treatments that would probably come with the discovery of lymphnode cancer (as her lymphnode biopsy's had come back negative-as well as a full body scan that was negative).

Mom received a phone call on Friday September 30th early evening from the surgeon telling her that her lab reports had returned early. She has a combination of 2 cancers called ductal carcinoma and lobular carcinoma-typically undetectale on mammograms. The cancer was found in BOTH breasts and was found in 14 of the 19 lymphnodes. The tumor was actually 11cm and allot larger then the original scans had indicated. She is classified as stage 3 or 4. She has not gone to the oncologists yet, so she is unsure what this all means. HOWEVER she has to heal from this original surgery before pursuing chemo, radiation and removal of her other side (left) lymphnodes. There is a great chance of metastasizing of the cancer in her body. Her treatments are going to be aggressive and inlcude IV chemotherapy as well as pill chemo (she orginally qualified for pill chemo only), Radiation and a myraid of other things. We will know more as she has appointments with the oncologists and recovers from her mastectomy's.

She is unable to use her arms at this point, and that is integral in her movements and mobility as she has very bad knees and leg joint problems. She was kept a day longer in the hospital because she could not eat much and her diabetes needed a vigilent watch of its levels.