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Monday, December 5, 2011

Skin Graft

I just wanted to put out a quick update. Saturday a week ago, I had a complication. Ended up in the hospital in Houston. We got back home Wednesday. On Friday Dr. Bauman called and wanted to see my first thing today. He also thought more than likely I’d have to get a skin graft. So mom and I arrived in Houston last night.

We went into the clinic at 8 am and I was in surgery by 1:45. I ended up with a skin graft from my scalp. The reason my scalp was used as opposed to my groin or thigh is for a few reasons. The first being that skin from the donor site in the upper part of the body would match my skin better. Secondly, it heals faster; thirdly, I don’t have to wear clothes on my head which could rub against the wound (I can wear a scarf or wig still to cover it somewhat though) and finally, Delaney is less likely to bump it on my scalp as opposed to my leg. She likes to cuddle, and to be held, so this was a very important reason for the decision as well. We asked if my hair would grow back and he said yes. So I chose to have my scalp used as there were many pros and few cons except its exposed more. However this too proves to be a pro as they want the wound left uncovered after 72 hours. Although both my scalp and breast look pretty wicked right now, they will soon both be healed.

I didn’t see Dr. Bauman after the surgery, however he spoke with mom and said the wound was deeper then he thought and was starting to get into the fatty tissue. It also wasn’t healing on its own; therefore it was even more critical that he performed the procedure before it infected the expander. I am in the hotel now. I will have to come back here next week for the stitches to be removed.

I still can’t believe this odd occurrence is happening; but as I’ve said several times now “At least I’m cancer free, so this isn’t life threatening, so I can deal with it much easier” I know God helps us and I know he has a plan. I believe this complication occurred as I needed it in order to help someone else in some way. Either during this trip, or some other time in my life, this was a necessary step in accomplishing this goal from God. This entire journey he has been with me and my faith has deepened through knowing it’s his plan. I’ve been much better at ‘letting go” and letting him handle what I have no control upon. Thank you God for my healing.

Monday, November 28, 2011

Complication

It’s almost funny, the below was the post I was working on Saturday before a ‘complication’ arose. At about 5 pm I noticed my right breast had developed a large blister. It large, covering about 20% of my breast and filled with fluid. (Very yucky and I have the photos so we can remember what it looked like and see the healing) I immediately called my reconstruction surgeon and was connected with the surgeon on call. He asked me to send a photo. Upon receiving it he directed me to go to the ER. He spoke with Dr. Wilhelm and it was decided that I should begin IV antibiotics. Dr. Wilhelm let me do it out patient as it was every 12 hours. I had two treatments at Kiowa and then Dr. Bauman emailed me and thought it would be best that I come to Houston. Stephen and I left around 11 am on Sunday.

Today I saw Dr. Bauman. He said he’s never seen anything like this and thought it was best to admit me to the hospital, put me on two different IV antibiotics, have a few other doctors’ visit, get an ultrasound and labs, have the wound dressed and treated several times a day, and see what happens over the next 24 hours. We’re hopeful that the area will be somewhat better by tomorrow and then I can be dismissed.

Dr. Bauman decided to drain the blister and remove the top layer of skin. He did this in office as thankfully I can’t feel anything in that area since my mastectomies. The fluid sample they took from the blister came back as sterile and apparently that is good. The wound doesn’t appear to be getting worse and Dr. Bauman will visit again tomorrow morning. I will receive another round of IV antibiotics around 2 am and we will see how I look. I asked about having surgery still on the 16th and originally, this morning Dr. Bauman said NO. Tonight however he wasn’t decided, so I said let’s just see how it looks tomorrow and then decide. So the surgery is uncertain at this point and is dependent upon the healing of this wound.

It’s so crazy that this happened as it’s such a bizarre thing. The cause isn’t known. It could be an allergic reaction, a burn (which I find odd as I would think it would have burned another areas too), or possibly some other random occurrence. They say we will probably never know the cause for certain……… What we do know is that the expanders do not appear to be affected right now. That is why they are so aggressively treating me as apparently if it gets into the expander it has to come out and heal, then be put back in at a later point. Right now they think it’s a surface wound, which I’m told is a positive.

Things can drastically change in a matter of minutes with this process however I am very lucky that this is really the only complication I’ve had thus far. I count my blessings daily as this entire journey could have been much more daunting. Thank you God for my healing.

Original post from Saturday:
It’s been a while since I’ve posted which is good as not much has happened. I’m still in remission, just getting my expanders filled, and trying to get my surgery schedule finalized. I was very blessed to find a plastic surgeon in Wichita. He was recommended by a member of my church family and his name is Dr. Tamir. He specializes in wound care and is truly an amazing and caring doctor. His staff is also exceptional. He agreed to help me with my expander fills. I ended up only needing to see him one time however that experience was wonderful.

Mom and I went back to Houston for a post op. The day before we met with Dr. Bauman I got a call from Dr. Lu’s office, my gynecological surgeon, and they had scheduled surgery for 12-16. Wow, was I surprised. When I originally asked about having surgery before the end of the year the teams acted like there was no way. Since there were two surgeons that only had Fridays as the same day for preforming operations, there were also many people trying to get procedures done before the end of the year, and my expanders needed to be fully expanded for a minimum of one month. Looking at all these factors, the doctors really didn’t think there would be openings until probably late January. So I wasn’t prepared to have the hysterectomy and the final reconstruction so close to Christmas. We weren’t sure if my expanders would be in place for a month so we confirmed that this was Ok with Dr. Bauman. He said that I could only have one more fill as my skin was getting too thin. He said maybe I should take this as an omen; that the stars aligned as he never would have thought things could have fallen in place for the surgery to be scheduled before the end of the year.

The 16th is awfully close to Christmas but if there are no complications we should be home by the 21st. We’ve been trying to decide how to best arrange this surgery trip and I think we’ve decided that Dad, Mom, and Grandma will go with me to Houston. Stephen will stay home with the kids as they have a lot going on with the Christmas Holiday break starting on the 16th. Then Stephen may take some time off or work from home for a week or so after I get back as I can’t lift over 10 pounds and Delaney is well over 20 pounds. It will be nice to bring in the New Year nearly done with surgeries but it also brings stress as the Holidays are already so busy. Since I decided to leave my worries with God and go with his will for my surgery, we’ve decided to go forward with this date and make the best of it.

We were able to reserve the large house we stayed in last time. It is very comfortable and as Ann, the previous owner and Cara’s Mom who currently owns that house says, “It’s filled with love and healing.” Both she and Cara are cancer survivors and now I’ve joined those ranks. I feel very blessed that the home was available as we are comfortable there, it’s easily accessible to the hospital, it’s a very safe area, and there is plenty of room for everyone. Thank you God for my Healing.

Tuesday, October 18, 2011

Remission

Went to Dr. Greene, my MD Anderson Oncologist today. Got a good report and I am officially in remission as of Oct 4. Praise God. One odd thing though, is that after the final pathology came back, 20% of my tumor showed hormone receptive cancer as opposed to triple negative. So I actually had two different types or forms of cancer. She said it happens but it seems odd to me? I guess when they do the biopsy it only takes a core of the tumor so the entire tumor isn’t analyzed until it’s removed. As a result of this pathology finding, the doctor wants to put me on Tamoxifen, as it reduces hormone receptive cancer reoccurrence so could help me by about 30%? Or at least my oncologist tells me this.

She said it is actually good news; not so sure having two types of cancer is good news, but I’ll go with her theory, as there is additional treatment, such as Tamoxifen, they can do with me so that I can reduce my rates of reoccurrence. I’m very happy that I have this option; just surprised to have both triple negative and hormone receptive cancers. I’m just unique I suppose. When I told one of my best friends Sue she said I always was an overachiever and that made me laugh. God made us all different, and it makes the world a more interesting place. So I just keep making is more interesting is suppose.

Also I’m told my chemo was extremely effective as I only have 5% residual cancer; she said that is microscopic in the cancer world so chemo did phenomenally well for me. Oh the world of cancer, I learn something every day about this disease. J I’m happy though to be officially CANCER FREE…… Yeah.

I’m doing pretty well overall; I still have stitches. I am also finding reconstruction is going to be a daunting process; however being cancer free is wonderful. I hope to get surgery dates when I see my reconstruction surgeon tomorrow and gynecological oncologist Thursday. I have mixed feelings about doing surgery before or after the New Year. If I do it in early to mid-December, I will be done with this all and 2012 will be start fresh. A new chapter so to say for 2012. I also won’t have to pay that darn deductible again. Stephen laughs at me for this reason; however my oncologist said it today and when I had my ultrasound today she mentioned the same reason and said she’s heard that a million times as Cancer is expensive. LOL

I also don’t want to be hurried and pushing the reconstruction process or for us to be overwhelmed during the Holiday season. So I’m really torn on what to do and when to try and get them scheduled. So I’ve been praying for my doctors to have the guidance to know when to schedule surgery that is best for me. God always knows the right answers and has answered prayers thus far, so I figure I’ll give this up to him as well. J it really takes the weight off of my shoulder when I do this and through this incredible experience I’m really learning to listen to him and fully trust in his will.

We come home Friday and are so ready!! It seems like we’ve been gone for so long. Although the outcome has been successful; being gone from the kids has been hard. I’m so glad that we have such a loving, supportive family and community so that we can leave when necessary but know our children are well taken care of. Dad has done a fantastic job with Gavin and Arrington and Grandma and Grandpa Gillig helped so much with Delaney. Also the cards of support and encouragement that have been sent to Houston have been so uplifting. It seems they always arrive at just the right time.

Both Gavin’s and Arrington’s class also sent me cards or drawings. They were so sweet and I know that years from now we will look back at these and smile. It is so wonderful to know that the kids are being supported so thoroughly during this time as well. We imagine this is hard on them. All the changes and our time away. We try to include them. To be open and honest with them, to the degree that will not scare them but they will understand and feel secure. It’s a fine line sometimes however so we pray for divine wisdom for these conversations as well. This is similar to our adoption talks, as we want to say the ‘right’ things but as parents we don’t always know what those are. It’s kind of funny as when you are a kid you think your parents know everything but as parents often times we think we really don’t know much. Thank you God for my healing.

Wednesday, October 12, 2011

Pathology

Got pathology back today; lymph nodes have NO cancer. Yeah. Also the chemo killed all but 5% of the cancer within the tumor. Yeah. However they are still up in the air on radiation. Yuck. They have a radiology committee meeting Friday and are going to discuss my case and give me their recommendation Friday afternoon. I don’t want radiation but I don’t want the cancer to come back either. So please pray for God’s guidance in my doctor’s recommendations.

I want to be sure I've done everything possible to prevent a re-occurrence however radiation will cause me to be in Houston for at least six more weeks and delay my reconstruction and hysterectomy. I've decided to try and give my worry to God as ultimately he makes all the decisions anyway. I am praying for him to guide my decision, as ultimately i can choose to have radiation even if the doctors say i should have it, and I pray I have the inner peace to know that my decision is his plan for my life.

As I ponder the past several months, I am surprised how quickly they have gone by. They say time flies when you are having fun; however I wouldn't consider these months fun but they certainly have been enlightening and a learning opportunity. God has shown himself in my life in ways I could have never imagined and he's given me glimpses into his plan for me that would I not had been diagnosed with cancer I might not have ever realized or known. Life has a funny way of working out, even if we don't think it's for the best at the time, it turns out to be part of the plan. Time seems to heal all wounds and helps us grow with knowledge and peace. I know that when I look back at this experience in a few years, I will see things differently but ultimately I want to keep a positive outlook through all this. Thank you God for my healing.

Monday, October 10, 2011

Recovery

Well we’ve been in Houston for almost two weeks now. I had pre op appointments last Wednesday and mapping and anesthesia on Monday. We were planning to leave all the kids at home and for Dad to bring them this Thursday, but we ended up taking Delaney as Jon and Tori were going to Houston for a friend’s dad’s 60th birthday party so they were able to bring her home on Tuesday Oct 4. The day of my surgery.

Dad is planning to bring the kids to Houston this Thursday so they can visit. Delaney will stay but Gavin and Arrington will go back on Sunday or Monday as they need to go to school. We’re trying to find someone to ride with Dad, as taking all three kids by himself would be a challenge. I’m sure it will all work out but pray that someone will be available to help him with the trip.

We enjoyed our time in Houston before the surgery and also attended our friend’s dad’s birthday party. I was best friends with his sister Nicole and Jon was best Friends with Jason when we lived in Pearland. We hadn’t seen Stacey, their dad, in 20 years. Jason lives in Kiowa now and works for RSI but I hadn’t seen his sister Nicole in probably 18 years. It was great to see them all again. Then on Sunday we went to their beach house in Freeport and spent the day reconnecting. Delaney got to play in the ocean and she loved it. She was covered with sand and even thought she’d taste it (however it turned out she didn’t like it) the look on her face was priceless though.

I checked into the hospital at 5:45 AM on Tuesday Oct 4th and was in recovery by about 1:30. All went well and it did not appear that the lymph nodes had any cancer; however they had to be sent to pathology and those results should be back by Wednesday. They also had to take a little extra skin on the right side where the tumor was as the doctor wanted to be safe as opposed to leaving even one tiny cancer cell. I’m glad she made the choice to be cautious as I never what this disease back. The reconstruction doctor said taking the extra skin wouldn’t affect the outcome so I’m hopeful that turns out true.

When I woke up I was in extreme pain. It hurt to breath; they were concerned they might have punctured a lung when they did my spinal block. So X-Ray was called in. Of course my lung was fine, thanks goodness; however the pain wasn’t under control. It literally hurt to breath. Since I’m allergic to so many pain medications, it was hard for them to find something to give me. Dr. Truong had given me NUCYNTA for the tumor pain. However the pain management team could only give that at MD Anderson. So they were called in. In the meanwhile they gave me morphine and it did not even take the edge off the pain. Finally they gave me something stronger and it worked. The issue was however that it was only available via IV. I couldn’t go home with it so I had to have the pain management group evaluate and make a plan for me before I could be released. For a while we were not sure it if was going to get to go home that day or have to stay another night; I wanted to go home as one night in the hospital was enough for me because they wake you up every few hours and it is just really hard to sleep. The pain management team ended up doubling up on the Nucynta and gave me a few other pain controllers to make the pain tolerable. Believe me, it’s always there, and I have not been pain free, but I can at least function, somewhat. Before they found something that worked I was literally in tears just from breathing.

I came home with four drain tubes. I’m hopeful they will come out on Wednesday which is when I have my follow ups with reconstruction, surgery, and radiology. We will also find out during the follow ups about my pathology as hopefully it will be back by then. The drains are very uncomfortable and are held in place with stitches. I also have stitches across my breast, I’m told these won’t show much once the reconstruction is completed but right now it looks pretty brutal. There are also stitches under my arm where they took my two lymph nodes. So I sort of look like Frankenstein. It’s very interesting taking a bath, as I can’t get the antibiotic stripes on the drain tubes where they enter my ribs wet so we put that saran wrap that sticks to anything on over the drains. Dr. Bauman told us about this and it works surprisingly well. It’s also a full time job keeping up on the medication I have to take. It’s something every four hours with most times several medications at once. For the first few days home from the hospital I could barely function. I couldn’t hardly see, read, or type. Talk about horrified, all I could do was lay around and watch daytime TV. Yuck. By today though I’m much better and have been able to decrease some of the medications which make me able to function better. However if I have to choose between that pain and functioning I’ll give up the functioning until I’m better as that pain was almost unbearable.

Mom and Stephen have been taking turns cleaning the drain tubes, as we have to do that in the morning and evening. Then we have to write down the output amounts and also take my temperature. With this info, we take it to the doctor and if it’s under 30 ML for two days in a row my drains can come out. So I’m pretty sure they will be removed on Wednesday. The drains make it very difficult to sleep and they also get easily caught on things, so I have to be extra careful and we all know how clumsy I am. Having them removed will be such a relief as I will actually be able to sleep on my side again. Yeah

I did have a post op follow up on Friday with Dr. Bauman and he said things are looking good. He did put me on an additional antibiotic just to be on the safe side as there was some redness but other than that everything was OK. They also put some fluid in my expanders and they will put some more in them this Wednesday too. He said if all goes well, I could have my final reconstruction in two month, which would be great as I’d like to have all this done before the New Year. During my reconstruction I will also have my hysterectomy and then this chapter should be closed. Thank God.

The house we are staying at is great. It’s very spacious and comfortable. Ann, the ladies mom that owns the home came and visited Sunday. It was wonderful talking with her. She then brought us dinner on Saturday. I’ve also received several cards and flowers. They are so pretty and smell so good. Overall the experience has been different then I expected but not necessarily worse. I’m just grateful that my pain is under control and that I appear to be healing well. I’m anxious to get my pathology results, and I’m hopeful that they will be negative so that I don’t have to have radiation. It doesn’t seem like we’ve been here almost two weeks already but I guess times just flies. I appreciate all the prayers and I truly can feel everyone’s love and concern. Thank you God for my Healing.

Wednesday, September 21, 2011

Surgery Time

Our vacation was wonderful. Relaxing and cool. River rafting was a blast. I loved it and no one fell out of the boat. The sulpher springs were interesting. One of those things that was an experience but I wouldn't go out of my way to do it again. It was nice to be able to just be with nature and enjoy the scenery. It was very easy to see all of God's creations and the beauty they behold. It's the simple things I've learned to love and appreciate since this diagnosis and part of this is just being. Of course we missed the kids, but they had a great time with Grandma Barb and Grandpa Steve. They were happy to see us when we got home and I think we were all ready to be back in our own beds. Time seems to fly and the surgery date is almost here. I finished my last chemo treatment on September 1. I was supposed to have chemo on August 29th however my count was too low; therefore I had to take injections for three days, and get retested on Thursday. Luckily the medication did the trick and I was able to receive, what I hope to be my final chemo treatment in my life. (I’m planning for the best and thinking positive as I don’t want to do this again). We are scheduled to leave Tuesday September 27th. I have pre op visits on the 28 and 29 and mapping on Oct 3. Then the surgery will be Oct 4. I’m anxious to get this over with but I’m also very apprehensive to leave the children for three weeks. Dad plan to cares for Gavin and Arrington and Grandpa Bev and Grandpa Bert will take care of Delaney. I’m hoping they will be able to come to Houston for a few days around Saturday October 8th and then Delaney will stay with us and the older ones will go home on Monday as they have school. I’m concerned that they will have adjustment issues, as this is a large stressor on everyone. Please pray for them that God will provide them comfort while their Mom, Dad, and Grandma are away. I know this has to be done, as I want the best outcome possible, so I’m going to the best doctors in the country, however it hurts just thinking about leaving them for so long. We won’t know about radiation until 5-7 days after the surgery as apparently it can take that long for the finally pathology report to come back. I just take it one day at a time, as if I have to have radiation, then that is another 6 weeks in Houston. I can’t imagine it, but I will do what it necessary to be here for the long term. It’s my life we’re fighting for so I can’t sit by and not do my best to save it. I am lucky enough to have a cousin, Morgan, who lives in Houston and works at MD Anderson. She was gracious enough to look at some apartments for us and we were about to rent one however at the last minute things changed. We were so blessed to get a wonderful house in Houston to stay at. Stephen’s mom’s friend’s daughter lives overseas and they lease their home while they are away. However they have allowed us to stay there during this surgery for a very minimal charge within our budget. It’s a beautiful home with plenty of room for the kids to come visit. It looks very comfortable and clean. We are so pleased that we will be in a nice safe area and are able to enjoy a home that will be our second home for several weeks. I was stressed over finding a living arrangement that would work, so this is a huge relief and an answer to our prayers. It’s different then going to a place for a few days, we’ll be there at least three weeks so we needed kitchen facilities, space, and most importantly somewhere clean and comfortable for me to recover. This has all that and more. Many thanks go out to my mother in law for helping us get this home and to her friend Ann and her daughter Cara for allowing us to stay here. I have been working on getting precertification for my surgery for a week now. You’d think MD Anderson would have done this already, as the surgery has been scheduled since March, but for some reason they waited until the last minute. It was rather funny today when the representative called me as she said they didn’t have a produced from Dr. Baumann the plastic surgeon yet and did I know what it would be. I thought, seriously, you are calling the patient when you could have walked down the hall to the doctor’s staff? That was totally odd to me, so I politely, or maybe not so politely, told her to call the doctor as I had no idea exactly what it was called all I knew is what was being done. I can’t stand not being prepared and I’m very surprised MD Anderson waited so long to get this pre-certified by my insurance. Oh the fun of dealing with doctors, insurance, and Cancer. However I’m on the downhill slide and can’t wait for this chapter in my life to be complete. Things have been really busy, getting ready for the trip and finishing up last minute details; however the days keep ending before I can get it all done. Isn’t that the way life sometimes is? I’m just so grateful that we have so many family members and friends willing to help us. I don’t know how many times I’ve said this but support and prayer are critical to making through this journey positive and successful. My post my shot feeling the stress but then I take a breath and Thank God for my healing.

Monday, August 22, 2011

Mountain Air

Not a lot has happened since the last post however I did have treatment three of this cycle. I also was able to get acupuncture after the treatment so I thought for certain I would have minimal side effects. However, I was greatly mistaken. It hit me hard Wednesday night. Nauseous, dry heaves, aching all over, and exhaustion. All the fun of what you visualize chemo normally is. Luckily I had a doctor appointment with Dr. Truong on Thursday so when I saw him he gave me some meds that basically just made me sleep. Which was great compared to feeling like I had the worst flu I’ve ever experience.

By Saturday I was back with the living, and we had our family pictures at the church. Although it only took about thirty minutes, I was exhausted when we got home and had to take a five hour nap. I hate not feeling well, it feels like I’m out of control. But I guess I am. I can’t control everything so I must just give it up to God and let him take control. I’m willing to suffer a little for the greater cause of remission. I’m so glad I’m almost done with chemo. My last treatment is Monday August 29th. Although I’m dreading it, since Dr. Truong told me I’d probably have the same side effects, at least they only last five days or so then I feel much better. I will have 16 total treatments upon completion. It’s hard to believe I’ve done that many, and looking back it has gone very quickly.

It’s amazing how wonderful it is to feel good. If one has their health they have the power to change things and make their lives happen. It’s almost like I have a new lease on life now that I’m feeling better. I found myself singing and dancing at the strangest times, for example at work. I guess I just appreciate my health and am happy to be living the life I love and loving the life I live. Even when I was feeling completely rotten, the thoughts of those I met at chemo kept coming to my mind. How lucky I am to have family and friends that are so supportive and loving. The wonder I know by having faith, hope, and love. The privilege I’ve been given to express my faith to others through my story. I truly am a lucky woman.

As I mentioned in my last post, Stephen and I left for Estes Park Saturday. I am so excited to have some R&R. It’s wonderful up here and so cool. It rained yesterday and was about 56 degrees. The smell of mountain rain is fabulous. The mountains are amazing; where the temperatures are cooler and the air is crisper. Did you know that the Stanley Hotel is located in Estes Park? It’s best known for its inspirational role in Stephen King's novel, "The Shining". The interesting fact however is that the founder actually came to Estes Park due to poor health. So maybe going to Estes will also renew my health? We’re heading to the Hot Springs today and white water rafting Wednesday. I’m living life to its fullest and not taking time for granted anymore; a good lesson for all of us to learn and live by. Of course we hit the outlet mall yesterday. Thank you God for My Healing.

Thursday, August 4, 2011

Downhill slide

Well I’m half way done with the FAC chemo. Or should I say I was half way done on July 20th. This second treatment didn’t cause me the leg pain as did treatment one however I was nauseous for over a week. I’ve made a call to Dr. Truong in hopes he can change my meds and help prevent this for treatment three which will be Tuesday the 9th. I also had flu like aching in my back and neck again. I told Stephen I felt like a bus hit me, and Gavin said “how would you know; you’ve never been hit but a bus?” It was so cute. I’m still facing fatigue but overall I have about a week of feeling yucky and then 10 days of feeling relatively good. The tiredness seems to hang on the entire time but the extent eases up on week two and three. So overall I’d say I’m doing pretty well and treatments could be much, much worse. I praise God for this daily.

We did visit Houston again last week for an appointment with the gynecological oncologist. It was interesting and to make a long story short during the initial appointment they were trying to talk me into waiting for the hysterectomy until I was at least 35 however after they saw my ultrasound they seemed to try and talk me into doing it. If the nurse practitioner would have let me have a word in edgewise I could have saved her a lot of back peddling as the funny thing is I always wanted to have it occur during the double mastectomy as my breast surgeon said it would be minor compared to what she’d be doing. Evidently I have cyst on both ovaries and my uterus. There is also a ‘suspicious lesion’ on my right ovary that they wanted me to do follow up on in six weeks. I told them there was no need as I was planning to get the hysterectomy in about 8 weeks so we’d see what it showed once it was removed. They will take out the tissue and then send it to a specialized pathologist that only deal with gemological cancers. They will then slice it into small sections and view each one for cancer cells.

The nurse practitioner tried to reassure me it was unlikely it was cancer and I told her that’s nice and all however I heard this same thing about my breast and we all know how that came out: Positive. I’m really not stressed over it however as what can I do now? Nothing so why worry. I’ve tried not to be such a worrier as I used to really stew over things I could not control. I’m told worry is lack of faith so I now try and hand it over to God as ultimately it’s all his will and in his hands anyway.

I can’t imagine being a non-believer? What would life be like; as I know when I leave this earth I’ll be with my heavenly father in eternal peace. I think life would be so scary to think that once we die we are done living. I am able to walk through life because I know I will have an afterlife in heaven and that is greatly comforting. I understand why many non-believers become so depressed when illness or death faces them as they have nothing to look forward too. This is why I’m often witnessing to those in chemo with me at Pratt as I want them to share the peace and know the truth that I know. God is always with me and if he’s on my side who can defeat me? I rest peacefully knowing that life doesn’t end on this earth as I’m promised eternal life in heaven.

We also decided to spend a week in Estes Park in mid-August. I’m looking forward to it; I’m ready to escape the unbearable heat and rejuvenate before my surgery. We are leaving the kids with Mom and Dad and this will be the first time in over two years that Stephen and I have gone on vacation without the children. I’m looking forward to sleeping in, reading a book undisturbed, and enjoying nature. I also decided I wanted to go white water rafting. I’ve wanted to go for a long time and figure there’s no time live the present. We are only going for a half day trip, so will only spend a few hours on the water, but it should be memorable. We are also planning to go to Hot Sulphur Springs and soak in the healing hot springs. It is said that the water is sacred; the Ute Indians believed in the healing qualities of the waters and referred to them as “big medicine” and “magic waters”. Ute tribal spiritual leader blessed the waters and the resort has been operation for over 140 years. I’ve read mixed reviews on the place, but I figure I can use all the healing I can get so we might as well try it.

As many of you know, I’m certainly not a mountain girl. I normally much prefer the Caribbean however I feel drawn to the mountains for this vacation for some reason. Through this cancer journey, I’ve learned to listen to my inner self so on August 20th we’re heading west to rediscover nature and get some much needed R&R.
I believe that is one thing we all need to learn is how to better listen to our inner being. If we can be quiet and actually hear what it’s saying we might learn a lot and avoid situations where we later say I knew something was wrong or I knew better then to do that. God put that voice inside us, or maybe it’s God speaking to us, but either way becoming more in tune is important.

I know God has put us all here for a purpose and although I don’t know what mine is completely yet I do know I want to leave this world a better place than when I arrived. How to accomplish this, there are many ways, but one of the particular ones I’ve discovered through cancer is to enjoy and live life to its fullest. In an odd way cancer has been a blessing. An eye opening and life changing experience that I’ve chosen to use for the better and learn from. I try not sweat the small things. I try to appreciate all the joys around me and count my blessing daily if not hourly. I’ve decided to take my diagnosis and make it into a positive as I don’t want to be remembered as the young mom who had cancer but instead the strong, faithful, positive woman that learned to live life through cancer and is helping others do the same. Live the life you love and love the life you live. As they say, when life gives you lemons make lemonade and that is what I’m striving to do. Thank you God for my healing and for helping me live life to its fullest.

Tuesday, July 5, 2011

Freedom


As I sit back and think about how lucky we are to live in a free society some immediate topics come to mind.  It seems like the news is always covering negative or controversial subjects but why is that: Because it sells.  We as a free society have the right not to watch and therefore force the media to focus on positives.  I’m also glad that we have the ability to see controversial items though as in many societies these are banned.  However in America, we are FREE so we have the right to watch and say what might not be considered status quo.

I deeply appreciate the service men and women who put their lives on the line to give us our freedoms.  Those that have given the ultimate sacrifice: their lives and those that continue to fight for our freedoms.  We are truly blessed to live in the best nation in the world.  It takes us however to continue our legacy and not fall behind.

Pastor Keith spoke about Jesus’ ultimate sacrifice for our eternal lives and asked if we are worriers or warriors? He said a warrior is one that takes positives actions to correct a negative situation.  I can tell you I’m a warrior and I strive to be more of one each day.  Over the years, I’ve had to choose to take this course as I too used to worry unnecessarily about things I could not control.  As I’ve encountered more of these uncontrollable situations, my faith has deepened and I’ve realized I have to give my worry up to God and accept his will for my life.  Did I always like or understand it; NO, but has it always worked out to help me be a better person and Christian; Yes.

Regarding my warrior status, I actually had a doctor tell me that I was too happy.  He goes on to tell me he doesn’t like treating triple negative breast cancer as it’s harder to treat, comes back more often, and is deadlier.  Well, thanks for that inspirational piece of information doc but what do you want me to do? Cry all the time and be miserable while I’m still here? NO way.  I’ve chosen to be happy.  I want to be remembered as making a positive difference in the world not as poor Miranda with Breast cancer.  If I’m only remembered for having breast cancer, I’ve drastically failed at becoming the person I want to be.  I’m a warrior; I’ve always been one who just wants to make the world a better place.  Now how I do that, I’ve never been really certain, but I know that my ultimate goal in life is to leave the world better then when I came into it.

I try and surround myself with other warriors; those that are fighting the good fight and making positive impacts.  Of course we all have our negative or down days, but overall those are few and far between.  That doctor I said was so surprised that I was too “happy’ for my situation was the plastic surgeon I was considering for my reconstruction, his name is Dr. Poggi in Wichita.  I really got mixed feelings about him, in some ways his honesty was refreshing but in another it was gruff.  I think I will work with him, at least on filling up the expanders, so I don’t have to travel to Houston every few weeks, but I’m not sure about having him do the final surgery or not with him.  But I have time to decide as that will be 3-6 months after the October 4th double mastectomy.

As most of you know, we also went to Houston last week.  We had such a great experience with corporate angels and the Conoco Phillips flight was wonderful.  It is direct and everyone is so nice.  They also offer complimentary food and drinks; add that to the fact that they have their own terminals, we couldn’t ask for me.  The one issue though is flights are only able to be confirmed 72 hrs. in advanced.  So instead of coming home Thursday we had to stay until Friday to get on the flights.  Dad thought it was probably due to the holiday weekend and another cancer passenger said he’s been flying with them since January and this was the first time he wasn’t able to get a flight.  So probably the holiday weekend did make the difference, nonetheless we were able to utilize it and it’s wonderful.  The only stressful part is not knowing if you can use it until 72 hours before you leave.  Worse case scenario we’d drive but flying was so much better.  I have to travel back to MDA the end of July to meet with the Gynecological Oncologist and I’m hoping we can take the Conoco flight again. 

We were met in Houston by a group called Ground Angels.  These are volunteers that drive you from the airport to the hotel. Our first angel was Ron and our second was Bill.  Both were extremely nice and it’s a great no cost offering for medical center patients as a taxi is $60 one way. Both Ground Angels and Corporate Angels not for profit who’s missions have helped so many. 

While in Houston, I also saw Dr. Green and got an ultrasound.  My tumor has shrank, probably by at least a third, but we didn’t have the finalized ultrasound report so don’t have the exact size.  Dr. Green said when she saw me before my tumor was protruding out of the breast but now she had to ‘dig’ for it to feel it so that is a very positive sign.  I also got my first treatment of the FAC chemo.  The chemo facility was great; private rooms with a bed and TV along with a chair for a visitor.  It was very nice but I don’t remember much as it knocked me out. It also knocked me out for the next few days and I’m still lagging from it. I also had immense bone pain in my legs.  I was speaking to another breast cancer survivor and she said she had that too.  It’s hard to describe what it feels like but it is almost like restless leg with pain if you can image that.  I even had to get up from dinner on Wednesday night and leave mom there because I couldn’t take the pain and had to get to the room.  We were so lucky the hotel had a restaurant on site as we ate there 3 out of 4 nights because I just was too tired to go elsewhere.

I also met with the reconstruction surgeon, Dr. Baumann.  He was nice and has agreed to work with Poggi if I decide to go that route.  Poggi told me that I didn’t need to go to MD Anderson as Wichita was just as good however I told him that’s interesting as the US News and world reports ranks MDA number one. He said they just have good marketing.  So needless to say, I was a little put off by and even that much more grateful for Dr. Truong as he’s willingly working with any doctor I choose.  Poggi said there was no difference between a gynecological oncologist and a regular gynecologist and he said any surgeon can do a mastectomy.  Well that is probably true, but can any surgeon do it well and get as much of the breast and gynecological tissue as possible because whatever is left there is a possibility for cancer from it.  I would love to have surgery in Wichita, and considered after talking with Poggi, but after a week of deliberation I know if my cancer came back and I had surgery in Wichita I would always wonder if I did it at MDA, the best cancer hospital in the World, would have I had a better outcome???

I don’t want to second guess myself so I‘ve decided MDA is the only place to have it done.  I’m very much going to miss the kids for three weeks, and we’ll have a lot of logistical planning to do, but we’ll make it work.  It’s my life right so what choice do we have really????

I appreciate the outpouring of support and have been told several people weren’t aware of the helping hands site.  Krista set this up and it’s great so if you’re interested in helping, please visit it.  At this point, I don’t have a lot of needs, but as I have some, I can post them and they will go out to all registered users. https://www.lotsahelpinghands.com/c/639924/login/ 

I know all the prayers and positive thoughts are working. I feel them in my soul.  I know I’m blessed to be so supported and live in a free society.  Many people in other countries are seeking this freedom.  I have the right to choose my surgeon and in many countries that is not the case.  We are so lucky to be in America the Greatest Country in the world.  Thank You God for my healing and allowing me to be an American. 

Monday, June 13, 2011

Live like you are Living


Time is really flying; I can’t believe I only have one more round one chemo treatment left. Dad took me today as Mom had VBS, and then I had an echo cardiogram.  It was a long day but a good one.  I’m so ready to be done spending my Mondays in chemo. I also won’t have to get injections three days a week or my blood drawn weekly, so that is going to be great.  With the second round of chemo I only do the injections for my white blood cell count one time and only will have one blood drawn over the three week period.  Round two chemo, FAC is what they call it, is once every three weeks. However, I’m told this next round is more powerful so I might have more side effects.  I’m hoping they are wrong, and I have more blessing bestowed on me but only time will tell.  I’m also very worried about traveling after taking FAC.  I keep telling myself to stop worrying and give it to God, but these little thoughts keep coming into my head so pray for peace for me for the upcoming trip to Houston and the new chemo regiment.

I am getting nervous to start round two of chemo though.  That will start on Tuesday June 28th and I will take that first treatment at MD Anderson.  So not only do I start a new chemo regiment, that is supposed to be crueler, I will also be at a new chemo infusion facility.  I really love Pratt.  The nurses are so nice, and I’m so comfortable with them making having this treatment in Houston somewhat stressful to me.  They want me to start in Houston so that I stay on schedule and so that Dr. Greene, my oncologist there, can watch how this affects me since it’s a higher dosage then what I’ve been taking.  I will also meet with the Geneticist, Michelle Jackson to discuss dad’s PKD and its genetic tendency as well as to learn more about the Ashkenazi Jewish Founder Gene that was discovered I carried from the BRCA 1 testing. I will meet with the reconstruction surgeon while we are there too.  So it will be a busy few days on top of the FAC chemo but I know we’ll be fine.

I see Dr. Truong on Thursday.  Mom and I plan to leave on Monday June 27 and return on Thursday June 30 for Houston.  We’re hoping we can hop a flight on the Conoco Phillips jet out of Bartlesville as they are involved in a program known as corporate Angels where they allow cancer patients seeking treatment to fly on their corporate planes when space is available. Kristi Molz told me about this and it’s a great option for me as they have a daily flight from Bartlesville to Houston.  Then they work with Ground Angels to take patients from the airport to the hotel.  Stephen will be keeping the kids and of course Grandma and Grandpa Gillig and Dad will be helping with the kids.

I read an interesting post on American Cancer Society: “So, I heard the song today...don't even know the title...it's about the guy that finds out he has terminal cancer and is dying..and what would you do...etc.
I started to tear up as I listened to it. Now, it's not in a bad way...we've all had that moment where we said is this going to take me? And we've all said NO! We are going to fight this terrible thing.
I'm still fighting (as so far winning) but I have to admit that 2 cancers have changed my life. I spend a lot more time just watching my kids...whether they are just playing together or if they are each doing their favorite thing...I never appreciated being here and being able to just watch them before.
I look at the big picture more now than I ever did before... Anyway, I just had to say to everyone, what is your favorite thing to do...And have you done it lately?? If not, why not...just go and do it.”

These ladies on American Cancer Society are so right. Why don't we just do what we love to do? It seems so easy but yet I know it’s so hard.  Sometimes I think: what do I love to do? What do I want to do? It really takes me some thinking so I’m actually writing a list.  I was able to do several things that I really wanted to do last year: Went to Jimmy Buffet, Key West, and The Eagles. Some other things I want are: Go see Fall Foliage with in the NE with my Mom, Go with Mom, Grandma, and Melissa to Amish Country in Lancaster, PA, Visit Europe, Don’t Sweat the Small stuff, Adopt a fourth Child, and taking dance lessons with Stephen.  Those are just a few but a start. 

I too have begun to notice the little things.  The clouds in sky, the cool summer mornings, the funny things the kids do, the smell of freshly cut grass or a thunderstorm, and the amber waves of grain.  I’ve also become so grateful for my life and my family.  I’m so lucky to have the job I do that allows me the flexibility to receive treatments with no worry of job recourse.  I’m so fortunate to have a wonderful work team there to support me and each other in times of need.  I’m blessed to live in Kiowa and be surrounded by the most wonderful people anywhere.  And God new just what he was doing when he put me in the arms of my family and our kids in our arms.  A family that truly loves me unconditionally and supports me no matter what. 

Now if you ask me what I LOVE to do I’d say It’s these things that mean the most to me and if I only had a day to live I’d live it with them. I’d read to my kids, cuddle them, and tell them what wonderful little people they are.  I’d write letters to each and every family member, and if you know my family that would take a long time as there are so many of us.  I’d invite everyone to Mom’s and Dad’s for a day of fun, swimming, food, and Karaoke.  (July 4th is just around the corner so be sure to join us then) These are really the important things in life and don’t really cost a lot but time.  You know, we really are all dying.  Once born we are moving toward the eternal end; to be with our Father in Heaven forever.  So Live the Life you LOVE and LOVE the life you LIVEIt’s up to you and you only to be happy, healthy, wealthy, and wise.  I know some days are harder than others to do this, so support each other in this quest.  Together we can do it.  Live like you are Living and don’t let a day pass that you don’t do something you LOVE.

Thank you God for my healing and for my friends, family, community, and your son. 

Tuesday, May 31, 2011

Over Half Way There


Memorial Day: a day for thought and reflection on those that have gone before us.  Those brave heroes that fought for us and gave the ultimate sacrifice: their lives.  Yesterday was a blessed day indeed.  We went to Grandma’s house and had a family dinner.  With our family, it’s always loud and crazy; but you can feel the love and I’m so happy that God put me where he did and chose this family for me.  I couldn’t ask for more love then I receive from all of them.

Melissa, my first cousin, had a great idea.  She wanted everyone to write down memories of those in our family that have already passed on.  She put them on a poster board for everyone to read.  It was very interesting to read the memories and learn a little more about our family history.  She also decided to get out the old photo boxes, so we went through some of them, and learned more about our large, loving, family.

Last week was a good week overall.  The dizziness and vertigo were much better and really the main issue was fatigue.  But nothing I couldn’t handle.  I was saying this to Mom yesterday and she said, “Do you think the acupuncture made it better?” I had completely forgotten that I did get acupuncture last Monday after treatment, so maybe it was?  I decided to try it, and if it works, yeah.  I had my 9th chemo treatment today and then also went in for acupuncture again.  We’ll see how my week turns out but I’m hoping and planning for the best. 

I’m now over half way done with my chemo regiments.  I have 12 the first round and 4 the second round for a total of 16.  So I’m on the downhill slide!!  I’m praying round two isn’t too hard on me, but I know God will protect and heal me so I must have faith.

I also saw Dr. Truong a few weeks ago and he said he believed the tumor has shrank another .5 cm.  So it’s around 3 cm now.  He also said he fully believes the second round of chemo will completely dissipate the tumor.  He’s very optimistic so that helps me to be as well.

I’m still so thankful for my ‘food angels’.  Those meals really help me maintain my energy levels, current weight, and ensure we all get a healthy dinner.  We have some fantastic cooks in our community and I just hope that I can repay the favor someday. Lotsahelpinghands is a great site and I’m so glad Krista found it. I find it hard to ask for help, but I know that pride is sinful so I’m trying to get better at it.  It’s a humbling experience to admit I can’t do it all; really I probably never could but you know us type A people, we think we can so we try until we can’t try an longer. 

This diagnosis has made me stop and think about the important things in life.  Is a little dust really that bad?? I say NO as long as the baby isn’t eating it.  J  Are toys all over the house going to kill me? NO as long as they aren’t in the path so we can’t trip over them.  Life is short, no matter if you have cancer or not.  All we can do is cherish the NOW.  We are not guaranteed one more second, so I’ve really tried to learn not to sweat the small stuff. As in the big picture will it matter?

There was a girl in chemo today that was very upset.  She was having a low day and just began crying uncontrollably.  She was talking the nurse and I truly felt for her.  She said she just is so scared to die.  She sometimes wonders why she even does treatments and she’s so angry at the cancer.  The nurse assured her all her feelings were natural and part of the grief cycle.  I told her the way I make it through is one day at a time.  I do have breakdowns and those emotions are normal so break down, get back up, and think positively towards our futures.  I told her I do treatments so that I know that I did everything in my power to win this battle but in the end it’s up to God not me.  I take it one day at a time and sometimes one minute at a time as I know with treatments we can feel great one minute and awful the next.  I told her that’s what gets me through and then I asked her if she was a Christian and had a church family.  She hesitated and then said YES, but I’m not certain she does.  So please pray for her.  I don’t know her name but pray she finds peace and gives her fear and burdens to God.  Of course I don’t want to die, but when I do, as eventually we all will, I know I’ll be in heaven with my maker.  I read the book, Heaven is for Real last week and it was great.  It got me thinking more about what heaven is actually like; as before I’ve only had an abstract concept of it. 

I’m also trying to meditate.  Just a minute to start with then I’ve tried to increase it.  Being quiet and thinking of nothing to be one with my being is a very difficult task for me.  However research shows the mind body connection is critical to survival. It also shows spirituality is key as well.  That is why I had to share how I cope with this crazy disease to the girl in chemo. Thank you God for my healing and I’m looking forward to another great week.