Through Thick and Thin

Monday, June 25, 2012

Monday, June 25,2012

This afternoon a Reach for Recovery volunteer made connections with me. We had a nice chat about our Journeys and she shared her experience with reconstruction. She chose to start hers immediately after bilateral mastectomies and it went flawlessly even though she did need chemo. She is very happy with the end result and said her implants feel like a normal part of her now. Her story once again makes me realize how fortunate I have been. Her mother died of breast cancer in her early fifties, one sister was diagnosed at 33, she was diagnosed at 50 and I don't remember the age her second sister was diagnosed. An entire family fighting the fight! I can't even comprehend that. For this family it means the daughters of any of these women need to start their mammograms at age 23, ten years younger than the youngest person diagnosed. That has to be an overwhelming thought for the younger generation of her family.

This evening I attended a support group meeting. We had a local psychologist as a guest speaker and her focus was on our families/support persons/care givers. Family members are always welcome to attend but were encouraged to attend tonight. It was my hope that Brad would join me but when I asked he made it clear he had no interest so I went alone. It was a wonderful evening especially since there was a new face-a three time cancer survivor. She has had breast, ovarian, and colon cancer. Now that's an amazing woman!

The psychologist asked what types of support we had received and we discussed how our supporters all have different roles-some visit, cook, text or email, some send cards, babysit, and even pray. She asked if there were any times when someone was trying to be supportive and instead it was hurtful. Unfortunately that does happen.  Sharing those stories made us all aware that if we are in the role of supporter we might more carefully choose our words so as to accomplish a more therapeutic effect. People don't mean to be hurtful when they try to help but sometimes they just aren't able to express themselves in an effective way. We spoke about the importance of long term follow up even after the initial diagnosis and treatment. A cancer diagnosis, even if considered cured, has lifelong effects. A routine physical can evoke incredible stress and fear of recurrence. Something as simple as tagging along at a 6 mo checkup may mean so much!

One point I found very helpful was  instead of asking what you can do it can be helpful to call and simply throw an offer on the table. Offer to get groceries, come clean the house, help carpool kids, or bring a meal. The person not feeling well may simply decline your offer of help because they are being nice or because they don't really know at that moment what it is they need. A simple suggestion goes a long way and doesn't put the person you are offering to help on the spot. I have a lot more experience being a support person than being the one needing support. That is definitely a tip I will try to remember.

It's amazing what can be accomplished in one hour and how helpful just getting together with other survivors can really be. The meeting ended with a brief discussion about Relay for Life which will be held at our local high school on Friday night. I will be attending and both of my kids will be volunteering for the event. Really hoping for some good weather and not the 100 degree heat that is predicted.

Saturday, June 23, 2012

Saturday, June 23, 2012

So much for recuperating after Kinsey's party. It has been a full week but we have accomplished a lot!
Today we will wind up a month of grad parties and then can look forward to our local Relay for Life this coming Friday.


Tuesday we spent all day in Indianapolis with Kinsey at UIndy for her registration/orientation. It was a good day for all of us and the campus is lovely.  Hard to believe she is officially a Greyhound  :) From there we stopped to look at trucks for Brody in Lafayette then work called me to come in. That was a L O N G day!


Spent the day Thursday with cousins at the pool then they spent the night. They ranged from 3-13. What a hoot! Friday was Brody's big day. We finally located a truck that works for him and he couldn't be prouder! He did so well researching and weighing his options. He joined us for part of the loan process so it was a good learning experience too.




Friday was also a follow up appointment with my surgeon. Things are still going well. We discussed my need for a colonoscopy. He didn't want to alarm me but suggested I do that before any further surgery be it removing the extra tissue or placing expanders. That way just in case there is a problem it can be addressed before moving on. I asked if he would do the surgery to remove extra skin or if he would refer me to the plastic surgeon. He is able to do it but suggested I see the plastic surgeon. That's fine with me as I have an appointment with plastics set for the end of July. I just really need to talk in depth with him about my infection concerns and the time frame as I really want to have everything finished by the end of the year if possible no matter which path I choose.


I can say that the look of the prostheses is not bothering me but I do have to be careful what I wear in the summer months.  Normally if a tank top or blouse is cut a little low it's no big deal, you may just see curves. For me though it's craters so I have to be very careful. I had not yet ordered a swim top when we decided to take little cousins to the pool. That was a serious challenge. My inserts were too heavy to put in my suit as the bras sewn in are not sewn at the bottom so they could fall out. I tried my bra under my suit tops but of course it stuck out too much.  I decided to use the soft inserts that came with my camisoles because they were light weight. They stayed in place fairly well but wanted to ride up.  I just had to rely on Kinsey to let me know if I needed to "re-adjust" at any point. I didn't get clear in the water, just stayed in the shallow end as I knew they wouldn't fair well getting wet. Needless to say the first thing I did when I got home was to order a swim suit top! We plan to go to the lake in July so I really need something that is comfortable and that I don't have to keep messing with. Our friends would understand if I went without my prostheses but I just wouldn't feel very comfortable doing that. 


While we were in Indy the American Cancer Society called me. They said they had no record of a volunteer ever making connections with me. I confirmed and they apologized saying they would get me set up as soon as possible. Later in the week I got a call saying that a volunteer would be calling me very soon. I am really anxious to talk to her about reconstruction! Hopefully the first of the week I will get a call!








Monday, June 18, 2012

Monday, June 18, 2012

We did it!!! We survived graduation open house! It was a lot of work but so worth it. I love party planning!  Can't hold a candle to my sis-in-law who has a degree in event planning but I love it just the same. I was determined that no matter what my stage of treatment I was going to make the best of this. Spaced things out for the week so that I could enjoy every minute. Took breaks to have lunch with a sister-in-law and her four kids at the restaurant where Kinsey works. Took the dog to be groomed and got my toes done. Had just the right mix of work and play.

As a big time planner and organizer I have been working on this for months. Did the centerpieces over the winter, wrapped silverware while I was down after surgery, fine tuned my scrapbooks and finally got to my favorite part-the decorating!!! Considering Kinsey gave me a hard time about all the memorabilia she had no problem wandering down from her room saying, "Mom you forgot this!" She didn't want a T-shirt quilt so we  choose her favorites and scattered them around. Looking over everything out of storage and in one place brought a new perspective to just how much she was involved in and how much she has accomplished. We have been blessed with such an awesome daughter!

Crisis #1-Oven completely on the fritz-Kinsey headed to the neighbor's to bake the cheesecakes.

Crisis #2-Piggy problems-Brad's family had a hog roast for all seven of their grad parties. His dad and grandpa build a hog cooker years ago and it was brought back to life for his parent's 40th Anniversary party. He put the hog on just before midnight and when he got up to check it at 2:30am there were big problems. One end had come off the spit and was dangling leaving chicken wired wrapped around the spit and it nearly burned up the motor. Brody got the brother of the year award for coming home from a friend's house in the middle of the night to help dear old dad. After two hours in the dark of cutting wire and realigning the pig he was back on track. Brody manned the spit until 7:30am so Brad could sleep a few hours then Brody headed to bed til early afternoon. We still managed to have him done.



Crisis #3-Rain-So much for being organized and having all the busy work done in advance. We took the tents just before the party but managed to have them back up and decorated just in time for the first guest. Later they did have to come down for good but fortunately the severe stuff missed us. In the end everyone had a great time and stayed safe from storms so that was all that mattered.

Now it's time to buckle down and start thinking about making some decisions. Today I called for a plastic surgery appointment. The first available is July 30th so I scheduled that. See my surgeon this week and am curious to see what he says about all the scar tissue I have. I am going to try to contact the Reach for Recovery program again this week in hopes of getting paired with someone who has reconstructed.













Tuesday, June 12, 2012

Tuesday, June 12, 2012

Last week was trying for me, just felt stressed. It seemed my family was perpetually grouchy -at least that was my perspective :). I have been concerned for friends and family with looming health issues, and was attempting to lay the groundwork for my reconstruction research. Probably most heavy on my mind is the intense need to just get away from it all!

Honestly I am more than ready to have this part of my life behind me! I have not focused on it much at all lately but wanted to at least make a couple of calls to have some things lined up for after Kinsey's open house. Everything takes time to orchestrate.   I just want a plan by the end of summer. Insurance wise it needs to be done and quite frankly I'm sick of dealing with health issues. What keeps me going is knowing I could be just getting going with extensive treatments, therefore of course I am still truly grateful!

The importance of a plastic surgery consult prior to mastectomy is important but knowing I wasn't doing anything immediately meant it was just going through the motions for me. Since my treatment consisted of only surgery another appointment to re-evaluate my options seems appropriate, especially since fluid and infection have changed the landscape quite a bit from it's original status. Hopefully a good review with the plastic surgeon will help me decide what is right for me. I tried to set up an appointment but they were out of the office. Will have to try again.

As mentioned before I did contact Reach to Recovery. Although it could take a week to be paired with a volunteer it has been well over two and I have heard nothing. Bummer! Need to call them back as well.  Guess that's what I get for having a type A personality that needs an itinerary for my journey! LOL

The overall silence about all of this by Brad has taken a toll on me. We met for a quick lunch after one appointment but have not so much as gone out for an evening alone since well before my surgery. I know it's been busy here but that is a serious need for me right now.  He has managed to find a few minutes to pick up the book I got him so maybe when things calm down a bit he can finish that. Right now we are on a month long marathon of celebrations


A visit from Brad's sis and her family ( who currently live in NY) brightened things up, plus several happy events like birthdays, baptisms, and grad parties got me through the week. Brad asked a couple of times if I needed a hug and I seriously thought I would melt into a gelatinous blob in his arms. We ended the week with Kinsey being Godmother and the baptism celebration with family.We hung out all day watching the kids play in the pond and it was delightful down time for all of us!

Wednesday, June 6, 2012

Wednesday, June 6, 2012

Tonight Kinsey and I attended a Lions Club meeting in my home town where she and several other grads were awarded scholarships provided by a Lions project  Cans for College. It was also Ladies' night for the wives of the members.  The men did a bang up job of hosting a nice dinner, providing a guest speaker and honoring the grads. Kinsey knew several of the men because we have volunteered with their group for several years. It was Hoosier hospitality at it's best.

At the end of the event some of the Lions came to me offering their support, letting me know they had been and were continuing to pray for me. It was quite moving. Speaking about breast cancer certainly is no longer taboo but it's nice to know that even in the presence of a men's organization, they feel OK acknowledging it. As always I thanked each of them and assured them that I really do still need their prayers. One actually told me he had followed me on Face Book. I'm sure several are aware of my surgery through my dad who is also a member. However it was they knew, it was comforting to know how much they cared.

It's not my intention to live and breathe breast cancer. Obviously I'm open about it and telling my story is very much a part of my healing process, but I don't want it to consume my life. I'm quite moved when someone wants to know my story, offers support, or has a story of their own to share. However, I would caution any woman diagnosed with breast cancer or person supporting her not to become consumed by the disease. I have read several books throughout my journey, all of them have had something very beneficial to offer, but sometimes enough is enough. Even the good, positive stories can be too much and you just need a break. Balancing the knowledge seeking, therapeutic conversations, support groups, good reads etc can become a real juggling act. Should someone approach you and ask how you are doing there is nothing wrong with a simple answer and stating you don't want to talk about it at the moment but maybe at another time. So far I have not been in a situation where I wasn't able to talk about my diagnosis and treatment, but at some point women do get "talked out." We all need a break from reality every once in awhile so I'm encouraging my fellow   breast cancer survivors just to be aware that you are in control.  Well wishers will certainly understand if it's just not a good time.
Tuesday, June 5,2012

The poison ivy is a bit improved but the steroids are so annoying. They taste awful, make me so hungry and really mess with my sleep. Just a few of their lovely side effects. Really do not like taking them but know they were needed to prevent any serious issues especially since the left arm is at a bigger risk of lymphedema.

Lymphedema is a condition caused by fluid accumulation in the interstitial tissues (connective tissues between the cells structure)  Normally 90% of water in the blood is filtered through our lymphatic system.  If that pathway becomes damaged or blocked the fluid can't be filtered and circulated normally. When this happens swelling occurs sometimes resulting in deformity and decreased mobility.  Cancer surgery and lymph node removal are risk factors that can contribute to lympedema. However, with the advent of sentinal node biopsy and fewer nodes needing to be disrupted, the risk of this complication is much less than in the past. Proteins may build up in the fluid and actually cause an infection, cause tissues to harden, and can harbor bacteria causing infections.  Antibiotics, skin care, bandages, manual lymph drainage (massage),compression therapy as well as physical therapy may all be treatment options.

Lymphedema may occur shortly after surgery and even up to years later but hopefully never. It happens in about 10-15% of patients.  Suggestions to help prevent this problem include no blood pressure readings, IV sites, or blood draws in the extremity at risk, don't carry heavy purses on that side of the body or hold grocery bags or heavy luggage over that arm. Monitor any break in the skin such as a cut, bug bite, or poison ivy. Even the simplest scratch can lead to a major problem. Keep any open areas clean and dry and apply antibiotic ointment as needed. Call a doctor immediately for any signs of problems.

Having bilateral mastectomies makes doctor visits and hospitalizations an even bigger challenge. Many times your doctor will suggest having blood pressures checked in the ankle and some will go as far as to authorize blood draws from the foot. Each patients case is different. If your doctor feels you are not at very high risk for lymphedema he may allow blood pressures to be taken infrequently in the side where there were not lymph nodes harvested. My doctor allowed the IV and the blood pressure to be done in my right arm.

Unneeded bills are getting so frustrating. Wasn't expecting to pay for a doctor visit and medicines this week. My oven just intermittently quits as I'm baking-was told by the repair man today I need a new one or I can pay $550 in repairs. Just lovely right before hosting an open house and needing my oven for meat and cheesecakes. Since the problem is intermittent I think we are going to try our luck as a new oven is not at all in the budget right now. To top it off got some bad news on a family member.  Have I mentioned lately how I can't wait until 2012 is over???

Monday, June 4, 2012

Monday, June 4, 2012

Emotional Roller Coaster! So many things on my mind yet a couple of weekends packed full of special family celebrations-birthdays, baptisms, and graduation. I'm trying so hard to put all that we have been through on the back burner but it's tough when there are big decisions to be made.




Yes that's our amazing "Little Boogie" Graduation was Sunday and we couldn't be prouder. At one point in her life she honestly thought Booger was part of her name.  Her preschool teacher asked her full name and she responded  "Kinsey Marina Booger Deno"  Wow we thought we had scarred our child for life! Fortunately she grew up to be a beautiful, strong, athletic, determined, young woman who has made lots of good choices and graduated with Academic Honors!  We are beaming with pride!  The ceremony was lovely and the kids ended it with a flash mob dance approved by the administration. It was so neat!!! I teared up a little then but managed to contain myself.

Then there is the not so fun stuff-things weighing  heavy on my mind. I have been bothering my sister about completing testing she kept putting off. We have done about everything together over the years including marrying cousins. I had the official cancer result in my hand the same day she had her mammogram scare. I have been so worried she would get bad news. Today a very dear friend had a hysterectomy for some suspicious cells. We met in nursing school and also have done so many things together/alike. The last thing my sister, friend and I need to do together is to have cancer. Fortunately my sister shared this weekend that her tests came back normal and all is good. HUGE relief!  Now praying my friend gets the same good news!

The fluid that I could see gradually building again in the right suddenly caused a firmer swelling in that area. It's so strange but nothing I feel the need to see the surgeon for. Just keeping an eye on that.

Today I had to call my family doctor because it appears I have a lovely case of poison ivy. Of course it would be on my left arm which is the side where lymph nodes were taken. Although I have had no issues with lymphedema  it can happen at any time, especially when there is a break in the tissue. I tried to be patient but finally called today and am starting steroids, a compress, and antihistamine. Hopefully that will knock it out. Odd thing is I got it now, not two weeks ago when I was doing yard work where the ivy is. Who knows??? I wanted to get it under control before it becomes a problem. Monitoring that very closely.

For now I just need to stay focused on getting ready for Kinsey's open house in two weeks. Lots to do but most of it is fun stuff. We have so many reasons to celebrate!!!