Joy Journal By Terri Rimmer

On March 19, 2008 I found out my oldest sister Joy has Stage One breast cancer.

I was going to wait to write about this. It seems that I’m being insensitive (maybe I am) by going ahead and writing about Joy’s diagnosis.

Those last two words in that sentence I just wrote look like a foreign language to me.

Joy’s Diagnosis.

It doesn’t seem real.

I’ve always been one to have delayed reactions to things. When my parents told me they were getting divorced as a child I didn’t cry right away, but retreated to my room.

I’ve been that way ever since. On the surface I guess it would appear that I am cold but that is hardly the truth at all. I just have always used writing to deal with tragedies and problems in my life.

Joy, 52, didn’t get her mammogram done last year because she was busy although she had gotten it the year before.

Five years ago her husband of 25 years died in a car accident.

She still has her grown daughters (my nieces) and her four grandsons and, of course, her three sisters and Mom.

Joy had planned to get her biopsy results March 26 but they came back early. She got the biopsy done and got a second opinion after that as to what to do.

“Thankfully it sounds like she caught it very early and she’s wise to get a second opinion,” said a friend of mine. “A friend of mine, a nurse has successfully gone through a double mastectomy reconstruction, hysterectomy. She had chemo as well as went through losing hair, but had a beautiful wig. Now her hair’s growing back, she’s got her port out (a site for IV chemo under the skin below her neck). She’s had some rough times but would you believe she worked through a lot of that time? Just amazing! She’s just got a positive, beautiful outlook and I am very happy for her. I know it would be most fearful to hear the word cancer but oh, how much better they are able to treat breast cancer now if women get their mammograms and proceed with treatment when needed.”

My friend, who is in the medical field, says it is such a much more knowledgeable time if one has to have breast cancer.

“I can so well remember when it was as bad as pancreatic cancer so I am very grateful for the research making survival so much more possible,” she said. “Like I’ve told you and others pancreatic cancer is where breast cancer was in the 30s so I hope it doesn’t take us (pancreatic cancer advocates) long to get where they are today.”

My friend says she sees her doctor, gets her mammograms, and does whatever it takes to take care of her breast health.

“I also do all I can do monitor my colon health, having my colonoscopy every five years. Itt’s so important after my brother had colon cancer (found early and survived it),” she stated. “I also get a chest x-ray every so often as my mom died of lung cancer. Of course she has smoked but I don’t want to discount my dumb teenage smoking and environment as well. I also keep my doc watching me for any sign of ovarian cancer even though I have had my ovaries removed. My sister survived ovarian cancer.”

My friend’s husband also gets his colonoscopies done, has his prostate examined.

“All of us, whatever color (African-Americans have a higher incidence of pancreatic cancer as well), must do all we can to prevent or obtain early diagnosis of cancers,” she explained. “I will be glad when we have early detection for pancreatic cancer. I know we must also keep pushing for research to win the war against cancer.”

3-20-08:

Well, she met with a dr. today for a consult and her surgery for the breast cancer will be in 2 weeks. At that time they will also inject dye into the area to see if it's spread to her lymph nodes.

3-21-08:

This email came from my mom today:

Jennifer called last night to give me an up-date. They all met with the surgeon yesterday.  The surgery is planned in 2 wks. He wants to do an MRI first and inject some dye to see if the cancer has spread into the lymph nodes and guess that way he'll know which way to go before the surgery. Jennifer said she likes the Dr. and he ans. all the questions very well. She said Joy was more up beat than she's been. There's a woman there who spoke with Joy about a support group with other women who have gone through the same thing and that's probably very good for her. Jennifer's very pleased that Joy's agreed to give up that one job at the station. When the surgery has been scheduled, I'll let you know. Oh, depending on if the cancer has spread into the lymph node....... it's my understanding that if it has'nt, then they'll do a lumpectomy ( remove the cyst and leave the breast) if it's spread in the nodes, they'll remove the breast and some lymph  nodes. I'm always afraid I'll get some things wrong by repeating them.  Jennifer's looking into a web-site where she can post all this info for us. I think that's very good as Joy can't go thru repeating the same story time after time, so I'll let you know.

3-22-08:

Got this on a message board in response to a question I posted:

“I was diagnosed with Stage 1 but grade 3 breast cancer with HER-2 factor positive.  I also had similar procedure done, it is called sentinel node biopsy to trace whether the cancer has spread in the nearest lymphnodes.  My diagnosis came out to be initially negative and only two  lymphnodes were removed even though they were not infected.  However, later on in another ultra sound a third node was discovered (close to the ones removed) with cancer cells in it.  Somehow it was not detected with sentinel node biopsy.  I was told it was an exceptional situation.

The procedure of sentinel node biopsy is done on the same day of surgery.  It took about an hour and a half. 

I am now undergoing chemo and waiting to have another surgery after my last (6of6) chemo  next week,  to be followed by radiation.

Best wishes for your sister.  Just know that so many sisters are out there like yours.  Keep the spirit up.

God bless us all!”

3-24-08

Received this from my niece Jennifer (Joy’s oldest daughter) today from Care Pages, a website where you can keep family up-to-date on a family member’s health:

Update 1 of 1

1 March 24, 2008 at 09:54 PM CDT On Wednesday, March 19th, 2008, we received the news of Joy (aka mom) having breast cancer. It was a very scary and emotional day for all involved. Once we got past the initial shock of the news, we met with the doctor to discuss the treatment plan and get all of our questions answered. The doctor told us that the type of breast cancer that Joy (aka mom) has is invasive lobular carcinoma. It is stage 1, which has the best prognosis out of all of the stages. The doctor states that this type of cancer can be bilateral so he wants to do a MRI to check the other breast for signs of cancer. The MRI is tentatively scheduled for Monday, March 31st. Once the MRI is done, the surgery will then be scheduled to remove the tumor. The doctor will test the lymph nodes 3 hours prior to surgery. If the lymph nodes are cancer free then he will do a lumpectomy and follow with radiation treatment. If the lymph nodes test positive for cancer then he will remove positive nodes along with tumor and will likely have to have chemo treatment. He also stated that they may have to use hormone treatment as well. We will just have to take it one day at a time and will keep you posted with updates. This is a bump in the road of life that many have faced and overcome...please keep Joy (aka mom) in your prayers:)

3-28-08 Messages posted to Joy’s Care Pages (carepages.com): Terri's friend, Margaret  Margaret Berry  March 26, 2008 at 10:18 PM CDT
Joy, I am a friend of Terri's, and you are in my thougths and prayers. Here's hope for a speedy recovery.
Love from Cindy, Lori, Firecracker & Charlie  Cindy Persico  March 26, 2008 at 07:42 AM CDT
We're sending big hugs your way, Joy, and hope you can feel all the love, support, and prayers coming to you. Take some deep breaths and trust that everything will work out the way it's supposed to. You are not alone and you have the best daughters in the world and your sisters aren't half bad either! :) Love and hugs, Us
From Gino  Jessica Kennedy  March 25, 2008 at 10:08 PM CDT
Hey Mom, There have been times in my life when I felt that God has put me to the test and didn't understand why. There have been times when I've believed what I wanted and not what he intended. The mind is a hard thing to break and mine has been broken or so I thought. When my Mother beat breast cancer I understood why I was being tested, what God wanted me to believe, I learned my mind had become even stronger and knew it was never broken. There are no words to explain how we all feel just know that it's all support and it's all LOVE! We love you very much and we have you in our prayers and mind all the time. Hugs and Kisses from Gino, Jess, Gaby and Alex
We're here for you..........  Jessica Kennedy  March 25, 2008 at 08:58 AM CDT
Mom - I am truly sorry and know this must be very hard for you. God has undoubtedly decided that this is yet one more step in your life that you will go through and while we don't understand the reason behind that, in the end, you will come out even stronger than ever....and perhaps it will all make much more sense then. Not a second in the day goes by that we don't think about you. As you will soon see here in these messages, you are and will forever be surrounded by an incredible amount of support. We're here to embrace you and walk with you every step of the way. I love you! P.S. Alex asked me to send you a hug and he says he loves you very much.
For Joy  Barbara Childers  March 25, 2008 at 06:47 AM CDT
Joy: This is Mom and Olen and we're keeping you close with our prayers and thoughts every day. I've spoken with Jennifer at length the other night and she filled me in on the Dr's. visit. It's very hard not to speak with you, however I'm here always for you if you want to talk. I understand you must be worried, but always that it's like Cindy says, God's got cha". and he does. We love you very much, Mom and Olen

My prayers go out to Joy and all her family  Michelle Kane  March 25, 2008 at 12:06 AM CDT
Joy, I just want to start out by saying that with God all things are possible I truly believe that he will put his loving hands on you and your family  and lead you to a healthy and cancer free recovery!! Your daughter Jennifer has been one of the greatest friends I could ever have.. she has helped me so much with my fathers cancer/illness and I could not have got to this point  without her... you are a very blessed mother to have such loving and giving  children.. that is a gift in itself.. They will be right by your side.. I know that for sure.. Again, I will continue to pray for you and your family. Take care of yourself  and may God bless you with Joy ( also your name ) and Happiness for many  years to come. Love, Michelle
April 24, 2008 “I am trying very hard to remain optimistic as I know it is the key to survival,” my sister says. “It is a very scary time for sure but I know with God’s help and many prayers I will get through it all.” Today, my oldest sister who was diagnosed in March with Stage 1 Breast Cancer is deciding on two options – take medications to shrink the tumor for four months with or without a research study or go with the radical surgery. She’s thinking it over. My mom says she‘s thinking it over and she doesn’t know what she’ll decide. My sister got a second opinion as to her choices April 21 after being diagnosed with the disease last month. May 13, 2008 at 10:19 PM CDT Jennifer, my niece, Joy’s daughter, posted this tonight:Wow...what a month it has been! Mom has been through the ringer with test after test but we finally have gotten some answers and started some treatment. We went to Northwestern twice last week for mammogram and biopsy so mom could start on an anti-hormone medication to help kill any cancer cells and shrink her tumor before doing surgery. Mom will be checked every four weeks to check for any changes. The hope is that the medication will shrink the tumor enough for the surgery to be a breast-saving surgery. The doctor hopes to keep mom on the anti-hormone medication for four months prior to doing surgery as long as she is responding positively. If there is no change at the check-up then surgery will be performed right away. The doctor feels this is the best option for mom due to her being post menopausal and her hormone receptor cite testing 100% positive...she fits the criteria perfectly...a positive advantage for her! We are hoping for a possible miracle...just keep praying and maybe our prayers will be answered. Thanks again to everyone who has written and called with words of encouragement!! May 19, 2008: Got an email from my mom telling me that Joy is on meds for the shrinking of the tumor and goes back June 4 for follow-up. She’s still got the upper respiratory stuff, though and in second round of antibiotics. She got an x-ray Friday to see about that. She has a positive attitude and appreciation of our cards. Posted to Joy’s Care Pages from Mom June 7: For Joy  Barbara Childers  June 07, 2008 at 06:48 AM CDT Joy: I spoke with you this wk. regarding your last Dr. visit. We're so pleased that the tumor's flattened out some and the Dr. thinks it's shrinking. You've been very close in our prayers and thoughts. I'm so proud of you and the courage you continue to show. We love you very much, so hang in there, sweetheart. love ya much, Mom and Olen. June 11, 2008: Dear All, I hit the odds of one woman in seven getting breast cancer. It was picked up on my first digital mammogram in early April. The difference between these and the old ones is the difference between looking at the stars at night through clouds or fog and looking on a very clear night. There is no comparison. In Maine where I live, every woman is allowed free mammograms. Check with your local Department of Health, but keep up on monthly breast self exams and keep to your annual mammogram schedule if you are over 40 years of age. BTW, if there is any change in nipple sensation, pleasurable as well as painful, it is a warning and must be checked. My life was saved this spring. I had a lumpectomy as part of the diagnostic procedure, but changed this to a mastectomy to avoid radiation on my left side over my heart. Because of Oncotype Dx testing and clear lymph nodes (sentinel node testing), my change of getting this again is about 8%. However, in the fall I am having a second mastectomy. My other breast is large and pulls down on my right shoulder, making it ache. It will decrease my odds of getting breast cancer again by an additional 90%. I like those odds since I already hit the jack-pot on the 8%. The cancer is probably the cause of the decrease of stamina I have had over the past year and a half. Yes, I am running fevers. I started them again last summer after 2 bad wasp stings, had 4-5 days of them after the lumpectomy. These will recede soon. It is a small price for having my life back! I started some supplements last fall when Roger told us what he was taking, and they have been an incredible help. Without them, this would have been a lot harder physically. I have to give a lot of credit to my woman general surgeon who has been fantastic all through this. She is young, very bright and as careful as anyone could ever be. Men...do you do your monthly breast exams? You can get it too, you know. Love to all, Anita with a new lifetime ahead! Anita writes more below, June 12, 2008: Dear Mandi, Terri and All, Mandi, I am sorry your friend had such a difficult time. I pray that her health continues to improve and that she never has it again. My daughter-in-law had a hard time with it, too, but she is free of it now after 4 years. I wonder how much your medical system is pushing early breast cancer detection when there is such a load of HIV/AIDS on your medical system. We have a much lower population of HIV/AIDS people, and with the rise of feminism in the 60s/70s there was a great amount of pressure placed on the medical community as a whole to research female disease as opposed to the standard male diseases, and to focus on breast cancer. In Maine where I live, there are free mammograms offered to all women regardless of their ability to pay (but those of us with insurance, of course, have our insurance billed). Terri, your sister's Stage 1 cancer diagnosis was a blessing. There are grades, then stages. Mine was Grade 2, Stage 1, meaning it was invasive, but the lymph nodes were negative. The ideal would be to get a diagnosis at Grade 1 Stage 1, as soon as it had appeared. Of course, the goal is to prevent it all. Early diagnosis is the key to not only survival, but also to less adjuvant therapy, i.e. chemo and radiation, so with the mastectomy taking the cancer out of my body and the lymph nodes showing no sign that the cancer had spread, I feel very blessed. Thank you for your continued good wishes. I shall visit the smilingwomen.org site (is that the name? I'll recheck, but I did take a peek there; looks good!) Hugs and Loves, Anita July 8, 2008 I get an email from Mom telling me that Joy went back to the dr. last week to see if the medication was still working to shrink the tumor and she tells me: “She had a friend go with her Tues., but got real sick, diarrea, vomiting, etc. on the way but went on there. Dr. took her off meds til this Fri. just to rule out that med. She got back, went to hospital for IV and antibiotics. She sounded better Sat. but thinks it may have been that Nutrasystem food, so she's not eating that to see. This Fri., she goes back on med. and Dr. thinks the tumor may be shrinking.” July 27, 2008: (Another email from Mom regarding Joy’s progress): I spoke with Joy yesterday for a long time. She's been passing blood in her stool plus also bad diarrhea, so it must be the medicine. She went to a gastro Dr. and they're doing a colonoscopy Aug.4th. (Mon.) From what she described, though, the blood sample looks like tissue or skin, so sounds like ,it may be debris from the intestines caused by meds. At least, let's hope and pray. She goes back Wed. to see the Dr. in Chicago and the girls are going with her. Aug 1, 2008: Mom sent Joy an email: “Our continued love and prayers continue to go with you. I'm so sorry the medication did'nt seem to work for you this time, however this new one will probably be better. Remember, it's just another bump in the road, but you'll overcome it. I'm so pleased that this last Dr. visit was good and that she thinks the tumor's shrinking. We continue to pray for you and the church here is also, so hang in there. We love you very very much, Mom and Olen (Email from Mom Aug. 28, 2008 on my sister Cindy’s 46th birthday): “I spoke with Joy on  Mon. as she went for a procedure (like a dnc). because she had some bleeding , but won't know results for a wk., but Dr. said all lokked fine and thinks it was again from the med. She went to Chicago yesterday for follow-up with that Dr., so haven't talked back with her. don't know based on all this, if she'll want to move the surgery if possible.” Labor Day, Sept. 1, 2008: (Email from Mom): Spoke with Joy Sat. re the latest visit to Dr.  She said the Dr. and P.a. told her re the meds, etc., they thought maybe to go ahead with surgery sooner than before. She also said 2 options offered were the lumpectomy or radical (both breasts), but if lumpectomy was done and not successful, then a radical would be done. She's to give her decision to them tomorrow and thinks then the surgery would go fast (how soon, I don't know). She also said she'd spoken with a plastic surgeon about reconstructive surgery with implants and ins. would cover it. I wanted to talk with you in person and may call you tonight.. She seems to think she may decide  to go with the radical, or leaning that way. I called Deb and told her yesterday. Sept. 2, 2008 (another email from Mom): I spoke with Joy this a.m. before she left for work. She's decided to go with the double mastectomy after talking with the girls as they said it would have to be her decision. She's to let Dr's know and do the o.p. prep. more later, love, Mom Sept. 3, 2008: (update on Joy from Mom): Joy's Jennifer just called and said Joy's surgery is tentavily scheduled for Sept. 18th., so will let you know for sure once I know. love lots, Mom Sept. 25, 2008: Joy had her surgery today, the double mastectomy for her breast cancer which took a couple of hours. The initial test showed that the breast cancer had not spread to her lymph nodes but they had to do some more extensive tests which took a couple of hours and they won't know the results of those for 72 hours. They'll put extenders in before she leaves the hospital.  Sept. 29, 2008: Email from Mom: Spoke with Jennifer today (late), and she said Joy spent the night last night with them and she and Jessica went on to Joy's today. She said when the cc's went down a lot on the drainage (according to nurse) then the tube could be taken out and also when the liquid becomes a lot more clear. said it's getting much more clear now, so hopefully may be the tube can be removed soos, but don't know about the antibiotic tube yet. let you know. I left a message on Joy's phone to call when she feels like. love, Mom Sept. 30, 2008:  After having the double mastectomy last week Joy got the results of the more extensive tests done today and was told that the breast cancer has spread to her lymph nodes. She will have to have another surgery next week and go through chemo. Oct. 5, 2008: I talked to my mom who’s with Joy then I talked to Joy. She told me her second surgery is scheduled for four days from now and then she’ll start chemo. She told me not to worry. Too late. Oct 7, 2008: I got my new Glamour Magazine in the mail and it had a story about a teacher who told everyone she had breast cancer and she lied. I was inspired to write a letter to the editor over that one! Oct. 8, 2008: I’ll be heading out in three days for a week to go take care of Joy. Her surgery’s tomorrow on her lymph nodes. Oct. 9, 2008: Joy’ s surgery day - Well, it didn't go well. They had to calm her down after because she was in a lot of pain. Then they said they weren't sure they got all the cancer from her lymph nodes. So they ran more tests and she will have the results of those Mon. Then she still has to go through chemo, too, either way. Oct. 16 ,2008: What the dr. said today: When she starts chemo sometimes you don't feel the effects of it till the second or third day. She will need housework, meal prep, and laundry help, plus probably help with the dogs. Plus she still can't lift anything and her arm will be very sore for a long time. (This a.m. she did notice swelling in that arm which the dr. said if that happens, she will be referred to a specialist.). She gets another mammogram in April and goes back to the dr. Nov. 3. The dr. gave her a prescription for Tramadol since she's still having trouble sleeping due to the pain. She's to start doing arm exercises by first taking a pain pill then putting an ice pack or bag of peas in her armpit till it's good and chilled. If she doesn't take a pain pill before the exercises she won't be able to do them. Then she holds the ice or bag of peas on there as long as she can stand it for 15-20 minutes followed by massaging well with her fingertips three times a day, 10-15 reps each for 2-3 minutes. She's to hold arm as high as she can during this. The dr. gave her a CD/DVD of the exercises. Dr. said it's surprising that there was no cnacer in the rest of the lymph nodes and that they only tested three. So the dr. asked the tech to test approximately five more and those were negative. Dr. said they usually test at least 6-8 lymph nodes. She had a 7 Mill. (good-size) deposit in one lymph node of cancer that was looked at initially.   The dr. gave her a work release which she can fill in. Joy is going to try to go back to work Wed. working three days a week at her full-time job. The social worker said that most people when going through chemo do not work full-time. They also gave her a prescription for a camisole which she could buy at the hospital uniform shop but because they do not take checks they gave her a catalog with the item no.; etc. which she can order. It's $53. Camisoles are worn by women who work after they've had the kind of surgery Joy had as an alternative to a bra. Joy's only going to try working a few hours a day at first, three days a week. The dr. said it is very likely that she can do chemo in Momence. The American Cancer Society can help her with transportation costs to Chicago as well as various other things. The social worker gave her a whole bag of info on various resources and will also be mailing her a packet. She said Cancer Care helps the most financially. Nikki said there is quite a bit of help out there for finances. The dr. said when they looked at thel lymph nodes they put through quite a bit of tissue and didn't see any cancer this time. They also gave Joy a copy of her pathology report. Some of what looked like lymph nodes in the tissue might have been Fibrosis. There is also another support group that meets more often than the monthly one Joy's been going to. In addition, a woman who has been through the same thing cam talk to Joy on the phone telling her what to expect.    Oct. 19, 2008: (An email from a friend of a friend regarding Joy): I am so sorry this has happened to her, She is So Blessed to have Family & Friends Support Like U, I Pray the Lord will give Her Strength, Courage & Peace as well as Carry Her thru this Trying Time in Her Life, Aren’t there some kind of assistance in finances so she can take off work for awhile & heal some before she need to go to Work, This is Such a Serious Surgery. Where does she live???? I Pray all is well with U & yours, Have a Blessed Day in Our Lord~love & Prayers to U all~lola Oct. 20, 2008: Email from Mom: Spoke with Joy late tis aft-noon. She worked today til 130 and said she's going to work those hrs all wk. if she can. She sounded more up-beat than I've heard her in awhile.said she was resting and going to work on those excercises for the arm via video. There was a presentation in Momence about that  lymphoderma ( swelling in the arm) that she wanted to go to tonight. I told her the importance of proper nutrition for herself, so maybe she can do that. She has a friend to go with her to the Oncologist on the 2nd. love ya, Mom (Footnote: Joy didn't have a double mastectomy, just had the one removed, and she is in stage 2. Then they also removed the lymph nodes that had cancer in them. Chemo's next.). Oct. 25, 2008: (Email from Mom): Spoke with Joy again on Thurs. She's seeing some friends, working still and almost sounds like her old self. said she got a call from the plastic surgeon's office wanting her to come nx. wk. to fill that extension, so Jennifer's going with her. She thought since she goes back the following wk. to the oncologist, she could couple it in but they would'nt let her. love ya, Mom Oct. 30, 2008: (Update from Mom): Joy went to Chicago with Jennifer yesterday to see the plastic surgeon to have the liquid put in the breast and said they want her to come ev. wk. but think she finally said she's going ev. 2 wks. She starts chemo on the 3rd. and they looked at wigs as she'll get one of them prior to chemo because she has to work. I guess she'll see once she starts chemo if she can do that closer to home. love, Mom Nov. 5, 2008: (Email from Mom): Spoke with Joy today. Her  consult was Mon. with Oncologist- said she really liked her. She said Dr. told her to have all med records faxed to  Dr. where chemo's to be done near her home (that's been done). Now they'll go over them, meet her and begin the treatments and said Dr. says it'll take about 4 mo. to complete. She's had her hair cut shorter and to get a wig soon. She seems in good spirits. love, Mom Nov. 14, 2008: Joy goes today to meet with oncologist near by to set up chemo appts. Nov. 23, 2008: (Update from Mom): Spoke  with Joy yesterday. She goes on Wed. to get the port in for the chemo and guess they’ll start it after the holiday. She decided to  go to Missouri to Scott and Jen’s condo for Th-Giving and Jess and them are also going, (also Elmer).  Her oldest dog ( Candy was just diagnosed with congestive hear failure, so she’s very sad about that and plans to take her along. She also got her wig in Chicago Wed. when she went to plastic surgeon with Jennifer. Ins. will pay half so that’s good. At least she’ll have one holiday with the kids before chemo and know she’s dreading it, so keep her close in your prayers. Dec. 2, 2008 (From Mom regarding Joy starting chemo today): Spoke with Jessica  last night and she said Joy's liver enzymes ( I guess) or count was elevated, so they're doing tests to see what's up with that before starting chemo. will let you know. love, Mom Dec. 6, 2008 (Update from Mom regarding Joy): I spoke with Joy last night briefly as it was her birthday. She was "down" as Elmer was working and guess the kids were'nt able to come be with her so she was alone on her b-day... sad!! More tests had been done to clarify the liver deal and guess the chemo's set to start Tues., so tests must have been o.k. but she did have a ct scan or plans to and that was'nt clear as she was crying. I'll be so glad when this is all over for her. Dec. 11, 2008 (Update from Mom regarding Joy starting chemo two days ago): Joy called last night and started chemo on Tues. She sounded a lot more calm than last time as I expect hills and valleys as she said. She's a little nervous about getting through holidays with crowds, etc as her immune system will be low. We must keep her positive.