Love of My Life, May You Rest In Peace!

Kelly’s last breath was taken shortly after 3:00am on July 16, 2010 in our home that we built together. God finally put an end to all the suffering my dear wife had to endure. I cannot put into words what it is like to watch the women of your dreams suffer so much right before your eyes and not be able to do anything to stop it. To feel so helpless is heart breaking and the sadness is unexplainable. The cancer tried to strip Kelly of everything including her breast, her hair, her ability to walk, her ability to think clearly, her ability to move her arms & hands and eventually her ability to see. What it could not strip her of was her faith, her loving family & friends that adored her so much and the love that Kelly I shared for each other. I could write about Kelly forever and never get tired of it but I would like to complete this blog by sharing some stories leading up to the end of Kelly’s life that demonstrate what Kelly represents and what we can learn from her.

About a week before Kelly passed away she was still fighting. It was Wednesday night and I was lying next to Kelly in her hospital bed chatting with her when she asked me to get her walker out of the garage and to bring it into the house. I asked her why she wanted it and she said because she wanted to try and walk. When she told me this, I was thinking it was the cancer progression making her talk a little crazy but she insisted. I knew that there was no way that Kelly could walk short of a miracle because at this point, she had no mobility in her legs and had already lost the ability to use her entire left arm & hand. That being said, I did not want to discourage her, so I politely said “Babe, let’s get some rest and in the morning if you feel up to it, we can get the walker out”. I figured by morning she would forget about it. She was very fiery and made me promise to her that I would remind her first thing in the morning. I agreed. Well morning came and guess what, the first words out of her mouth was “please get the walker, I want to walk”. I could not believe she remembered and that she wanted to attempt the impossible. But let’s remember, this is Kelly we are talking about here, she never gives up. So I went out to the garage, brought in the walker and placed it by her bed. She then went on to say “get my shoes, I am going to walk” Reluctantly I said Ok because I did not want her heart to break when she could not do it. So I went through all the motions. Got her dressed, put her shoes on and slowly raised her up onto the side of the bed. She was in so much pain but wanted me to continue to get her up. Once she was up, I put the walker in front of her, put both her hands on the walker, got her sitting straight and told her she was ready. After a few minutes of Kelly sitting there starring and thinking of the situation, she finally realized there was no way she was going to walk. I then told her, “babe, you are tired today, why don’t we try it another day when you have more strength” She hesitated for a minute but then agreed. I slowly put her back down into the bed. Once she was comfortable, she asked me to come close to her and she told me, “Babe, I do not want you to think I am giving up, because I am not!” When she said this, it brought tears to my eyes. I gathered myself and told her, babe you are not giving up, you have never given up, you are the strongest women in the world, that’s why I love you…No one will ever think you gave up, I will make sure of that”. She never did give up, she continued to fight all the way till her final breath.

A couple days later, Kelly and I were watching a movie at night in her hospital bed (she did not want to sleep alone, so I would jump into bed with her until she fell asleep) when Kelly said “Manny, can you pause the movie, I would like to pray” I said of course babe, as I always loved to pray for my wife. Well I paused the movie and got ready to pray for Kelly’s healing when Kelly said “babe, I don’t want to pray for me, I want to pray for Carla & Zeph’s soon to be born child ( Carla & Zeph are Kelly’s Sister and Brother in law) that will be arriving this January” She wanted to pray to god that her sisters baby did not have any heart conditions like Carla’s other daughter. Even though Kelly was facing her own mortality, she still was putting others ahead of her in prayer. A child that has not even come into this world, she wanted to pray for. This was so inspiring to me, it brought me to tears. Kelly always put others ahead of herself her entire life and continued to do so till the very end.

As Kelly began to lose the ability to talk over her last couple days alive we started to have to squeeze her hand for answers to questions. However two days before she passed, I was taking care of Kelly in bed, helping move her around as I always did to make her more comfortable. She grabbed me with her hand and pulled me close. She put her hand under my shirt and rubbed my chest. She loved to do this while she was in the hospital bed as it was her way of being intimate. As she pulled me close, she softly whispered “Thank you for taking care of me”! I could not believe that she was thanking me. It tore my heart out to hear her say those words. I responded to her by saying “ Babe, you do not have to thank me, it was my honor to take care of you…I would not have it any other way and would not change a thing…your welcome and I love you so very much!” She then closed her eyes and went back to resting. These were really the last words that Kelly said to me.

I promised Kelly on her last day on earth that I would not let her life and death go in vain and that I would make sure everyone knew how hard she fought. I also promised that I would try and better this world based on the gifts she taught me. At Kelly’s funeral service I had an opportunity to start the promises I made to Kelly by getting up in front of all of our friends, family and other guests to speak about what Kelly meant to me and to all of us. All I can say is that I felt Kelly with me the entire time. Under normal circumstances, I would be nervous and stir crazy speaking in front of 800 people, but that day I did not feel a nerve in my body. What I did feel was Kelly standing right next to me the entire time. She pushed me to be stronger and that day I certainly was. I had not prepared at all for that speech. Even our priest, Father Rudy, thought speaking was going to be too difficult and advised against it but I told him I had to do it for Kelly. Once I made my way up to the altar, the words just flowed out. I know that Kelly was helping the words flow from my mouth that is the only way I can explain it. After my speech was over, I felt I like I got hit by a truck but the entire time talking I felt Kelly’s love for me and all the love in the room for Kelly. It was certainly a once in a life time moment that I will never forget.

I truly believe there is no such thing as coincidence in this world…if you feel the same way then this last story may bring tears to your eyes. The night before our wedding last year, Kelly gave me a special gift. She gave me watch that was engraved in the back. I love this watch, it is so special to me. I only wore it for our wedding because it was so nice. After the wedding, I put it away in my dresser and had not touched it all year. The night of Kelly’s viewing, while I was getting ready, I thought to myself, I should wear my special watch, I know Kelly would like that. So I opened my dresser, pulled out the watch and noticed that the battery was dead. I briefly put the watch back in its place but something made me pull the watch back out. I told myself, I don’t care if the time is not working on the watch; I am wearing it anyway because it meant so much to me. So I proudly put it on and headed to the funeral home. I was sitting with my mother in law and other family members during the viewing. After a hour or so, I leaned over to my mother in law and mentioned to her that I was wearing the watch that Kelly gave me for our wedding. I told her I was wearing it even though it was not working. She wanted to see it so I showed her. After briefly looking at it, her mouth dropped upon looking at the face of the watch. She looked at me and said “Manny, look at the time” As I looked down at the time my heart almost stopped. It was just after 3:01am. The watch froze at the time Kelly passed away. I could not believe it. To make it even more unbelievable, Kelly had the watch engraved “MK, Until The End Of Time”. This is just not some strange coincidence, however everyone can believe what they wish.

Kelly was a gift from god to all of us, I truly believe this. When I look back over all the little things that happened over the past 20 years that led to Kelly and I ending up together, it truly is amazing. My plan is to write a book about our love story, Kelly’s faith and the inspiration she has shown us even in the toughest of times. Even though I am not much of a writer, I feel as if Kelly is continuing to push me. Whenever I wanted to just be ordinary, Kelly made me be better. I used to always talk about being extraordinary…well the truth is she was extraordinary. Kelly made me the man I am today and I owe her my life! She opened my eyes to the world as I now know it and she gave me a gift that not too many people will ever have. Now it’s up to me to share our experiences to make the world a better place.I feel so lucky to have had the opportunity to be so in love with Kelly. The love we have for each other is truly amazing. So unconditional, I wish everyone reading this blog gets to experience love like ours in their lifetime. As Kelly stated in her very first blog, “I guess the vows "through sickness and health" really hold true here in our home”...we demonstrated this to the highest level. So when you get down in your relationship and your feeling like life is just too much to handle, remember Kelly and I.

I would like to personally thank each and every one of you who have read this blog and for all the beautiful comments you have shared. I would sit up at night and read to Kelly all the comments on the blog even on her last days. I know the comments continued to give her strength even at the end.

I hope that you have been inspired by Kelly and I in some small or big way. Continue to try to and be a better, stronger person, love deeper, live freer and don’t ever stop believing in your dreams. Continue to put your stake out farther away then you normally would and try to reach for it. Love life and live it to the fullest.

Smile for Kelly after reading this knowing she is looking down on us from heaven with that big smile we all remember.

Love you Babe, Rest in peace!

Decisions...Decisions

Today was one of the hardest days I have experienced so far in my life so far. I had to make a decision for Kelly to either try and get her up to her chemo appointment or to let her rest in peace at home and to start the ball rolling in asking for help and the services of Hospice.

A little background as to how this came about. Last Friday, we went to our normal brain chemo appointment. Kelly’s mom and I both noticed how difficult it was becoming to transport Kelly to and from San Jose for her appointments. The anxiety, pain & suffering it was causing Kelly was hard to watch. When we sat down with the Dr that day, we had a conversation about continuing treatment. I made it a point to ask Kelly in front of the Dr If she really wanted to continue with this plan and that we were all ok with her decision either way. She expressed that she still wanted to continue the plan of receiving chemo for at least one more full treatment. This put me at ease knowing that even though it was so hard to get her to the appointments that she still wanted to try and fight. As a husband, this is the kind of spirit that always made me feel so good.

Unfortunately, over the weekend things started to change. Kelly started to become less mobile with her upper body and her strength started to decrease. She had become more and more displaced and very confused at times. She started to be in more and more pain and was very repetitive in the things she would say and ask for. By Sunday it became hard to get her out of the bed and when I did get her up, the pain was so severe she asked demanded to go back right away. This made me sad, depressed anxious, you name it. To see her get worse right before my very eyes was so treacherous. She did not want to eat or drink much either. That takes us to today. I got her up with every intention of taking her to her chemo today, or at least give it a try. Because she was so weak it just made it impossible. She was also running a fever of 100.4 which meant they probably would not give her chemo anyway. I asked Kelly what she wanted to do. In a soft whisper voice she said she still wanted to go. I expressed to her that it was ok to take a break from the chemo and that her body was so wore out I did not think it was such a good idea. She then agreed and said that I was right and she really did not want to go. Although I wanted to whisk her up there I knew that this was the best decision for Kelly. She has been through so much and her body is just starting to say “Time Out”!

After a while I called the Dr and had a conversation about the situation. The Doctor agreed that if Kelly’s symptoms of confusion, lack of mobility, loss of coordination, extreme headache and body pain, fever were all increasing, Chemo Therapy would not be the best solution at this time. She also felt that these are all signs that the cancer is just progressing and not the medications causing the problems. I also asked the Doctor some questions that they always avoid and I pretty much got the answers I was looking for. She agreed that Kelly’s long term prognosis was not very good based on how fast and aggressive this cancer is spreading. The next thing I did was get in touch with Heartland Hospice on the phone because the Doctor felt they would be our best resource at this time. After talking with Hospice on the phone I felt better knowing that by them coming out to help, it does not mean the end and that hope is gone. They are just here to help Kelly be more comfortable and to help us manage her pain more effectively. They also let me know that if Kelly does start to get better she could always cancel the Hospice service and go back to treatment options.

It was a long rough day but it feels good to write to everyone. Kelly is very scared right now and is having thoughts that because Hospice is going to help us that her life is nearing an end. I keep telling her that that is not the case and we just want her to be in some comfort and the pain she is experiencing is not ok. I believe she is starting to accept that things are not going the way we would like but that it’s not over till it’s over. I feel the same way. The best way to put it is, you prepare for the worst, you hope for the best. More importantly we are cherishing every second that we have with Kelly. Living in the moment is really the only way to get everything that life has to offer. I know we all have our problems and issues but if we just take a step back and realize what’s truly, truly important in life, it’s amazing how you can be changed. I know that this experience has changed my perspective in so many ways, and I take nothing for granted. So please for me, after you are done reading this blog, go out hug your wife or your husband or your significant other, your children and tell them how much you love them and how important they are in your life. Our lives can change so quickly, life is so fragile, your heart can be ripped from your chest and your world could be turned upside down in a blink of an eye, so again take nothing for granted. That’s enough preaching for now; I know you are all not reading this for advice on how to live your life, just sharing from my point of view.

Please continue to pray for Kelly and for god to give her strength and to find peace in whatever comes next in her life. God bless everyone and thank you for continuing to read share our story, I pray that Kelly’s life will have touched so many people and changed everyone for the better, I know she has done that for me. Thank you to all the DBOM ladies for the wonderful surprise from the Omaha Foods. That brought a big smile to Kellys face when she saw those boxes on our door. God bless you all!

One Day At A Time

We are now taking it one day at a time...
Well after five days of being home, we are starting to adapt to life outside of the hospital again. The first couple days were rough because we had to basically re-train Kelly again to get up out of the bed and into the wheel chair regularly. Having Edna (live in home care help we hired) has helped me out quite a bit with cleaning, cooking, and working with Kelly. While she was in the Hospital last week she did not get up out of the bed, this was basically the reason she ended up with a blood clot in her lung. My goal is to try and get her up out of bed as many times as I can in a day. Each day seems to get a little better as far as getting her up goes. Yesterday I got her up at least 5 times! Yesterday was a good day, we had our brain chemo appointment that went fairly well. We did find out that Kelly’s white blood cell count is down again, which means we had to give her the nuepogen shot which helps get the counts back up. We also found out that Kelly’s blood got a little too thin based on the blood tests we took. So now we don’t have to give her the Lovanox shots (blood thinner) for the time being, just the pill form (Coumadin). Yesterday I was also able to get Kelly a newer hospital bed, one that has a button to raise it up and down mechanically. The old one was very old fashioned; it had a hand crank which we turned to get the bed up and down. I also got the Dr to prescribe an air mattress and pump which should help with some of Kelly’s back problems. So in terms of our days, yesterday was a good one. We are just trying to take it day by day. Actually we break the days into two parts, Day time and night time. Once we get through the day, we try and get through the night. This seems to work for us and keeps things in perspective. If we look out much farther than that, it can be overwhelming. We have talked to Heartland Hospice out of Monterey and they are going to come out and talk to us about services they offer and how they might help our situation. I told them we are not giving up this fight yet and that Kelly has a negative connotation with the term Hospice…but they assured me over the phone, going on Hospice does not mean the end but only help and guidance as to what to do in tough situations. They also will provide much needed support in the way of pain management for Kelly and also help with her high level of anxiety. Kelly is still having a hard time at night so this might be a really good resource for us. Hopefully they can help us even though we are still fighting and on chemo, so we will see how that goes. Our schedule looks like this, we will continue to receive brain chemo on Tuesdays and Fridays and every other Tuesday Kelly will receive her systemic chemo (chemo that works all over the body). After a few more weeks of chemo we will run some tests to see if it’s working or not. We also are hoping the brain chemo is working, the latest findings in the fluid have shown less malignant cells then when we started but since the sample sizes are so small it’s hard to tell at this point. Thank you to everyone out there for all the prayers and support. A big Thank you to the Dinner Delivery group & to Jan Holthouse for continuing to let us borrow the van for transport. Take care and god bless. Manny & Kelly

Like a Kick To The Mid Section

Like a kick to the mid section is really the only way I can explain how Kelly and I feel this morning.  Although only a few hours have gone by since our last post we learned some new information this morning.   We were awoken by the oncologist who is filling in for Dr. Scates while he is out on medical leave.  She was a soft spoken lady that told us the scans that they did yesterday actually showed that Kelly’s liver now has multiple lesions. This is not something we were expecting to hear right before we thought we were going to get discharged from the hospital. I told the Dr that this does not change our plans and that we want to get out of the hospital and be in our own home. She agreed and said that is fine. She also said that we would not be able to ever do the pill form for a blood thinner because Kelly’s liver is now compromised. This means I will have to give her injections basically forever. The oncologist still feels that the chemo we are doing is the only option we have for Kelly other than giving up because it has shown to have some success against Kelly’s particular type of cancer. Kelly actually took the news very well and stated to me that she does not want to give up and continue to receive the chemo. Her saying this made me have a breakdown because I know she fighting so hard still because of me and our families. I took the news much harder than she did, just trying to keep things together in front of Kelly and to try and be half as strong as she is. A normal person might just throw in the towel at this point, learning in the past three days that your cancer has spread to your other breast and now to your liver, but as well all know Kelly is not your average women. She is more special than any of us will ever understand. This blog is the hardest one I have had to type because things have changed so quickly for us and I want to spend every minute with Kelly. I really do not know what else to say but that I want to share this recent news with everyone else who cares so much about my wife. Please continue to pray for Kelly to be strong through this difficult time. God bless, Manny & Kelly

We Are Starting To Get Home Sick :(

Well today we received some unexpected news.  We thought we would be leaving the hospital today (Wednesday) but because Kelly has had such a high heart rate (125-150) the past week, the Dr’s felt something still might be going on. So this morning Kelly had to do a full chest scan to check for different things that could be happening.  We sat in our room patiently expecting the discharge nurse to come in any minute.  Well that never happened.  The hospital Dr came in to let us know that Kelly had a small blood clot in one of her lungs.  This was a big red flag to the Dr’s and they said we could not go home.  They said the team of Dr’s were going to collectively evaluate the situation and come up with the best solution for Kelly.  Around 5pm the Dr finally came back to tell us that they wanted to keep Kelly on blood thinner shots but just up the dose and do this from home. The one thing that would prevent us from doing this plan was if the insurance would cover the shots and let us administer them at home. Well we checked with the insurance and they said they will share the cost of the shots with us. That beats us staying the hospital another five days which is what was option B.  While taking these shots, we have to get her blood checked every other day to make sure the blood is actually thinning.  The Doctors believe that with Kelly’s condition and the fact that she has been battling a lot of anxiety, she is high risk for blood clotting. The fact that she has cancer could also be making her heart just work harder. The Doctors all felt strongly about getting Kelly home and that her anxiety should get a bit better when we get back to familiar surroundings. Because I have the experience giving Kelly injections from when did our fertility treatments back last July, the Dr’s feel comfortable for us to administer at home.

On a couple good notes, Kelly has not had a fever since Saturday, so any infection that she had should be gone.  Because Kelly was doing well and had no infections, they decided to give her all of her Chemos yesterday.  They feel like we have to be as aggressive as possible because the cancer is so aggressive.  So far Kelly has handled this week’s chemo well, she is just very fatigued and wants to sleep most of the day.The oncologist visited us this morning and said that the samples they have taken from Kelly’s brain fluid have come back with no cancer cells in them.  Sounds like great news to me but the Dr said this probably just means the samples they have been taking were not large enough samples to find cancer in them.  The entire team of Dr’s that have tried to pull fluid out of Kelly's brain have had problems.   Even the surgeon who put in the port could not get a good draw.  Hopefully the oncologist is wrong and the cancer in the spine is really gone because the chemo is kicking its butt! We will have to wait about a week to see the next sample results. 

So we should be going home sometime tomorrow if everything goes well tonight and in the morning.  Kelly has expressed many times how bad she just wants to get up out of the bed and go home. Lately, Kelly has been experiencing nightmares in which she is walking in her dreams but only to wake up and be able to move.  This has brought her a lot anxiety, especially at night.  This will be another obstacle we will have to overcome but I know we can get through it. Thank you for all the wonderful comments, wish we had time to write back to everyone just not enough time in the day. God bless you all.
Manny & Kelly

Blood Cell Counts Back Up

Well after four days in the hospital we literally do not know much more information.  They have not been able to find anything out from all the tests they performed.  What we do know is there is No infection found in the brain or anywhere else for that matter.  That was the big concern, a infection to the brain and spinal fluid.  They think because the anti biotic’s started attacking any bacteria that was growing before the cultures where taken at Hazel Hawkins.  It could also be that her immune system was so low that she just got sick from all the chemo.  The good news is that her temperature is back down to normal and she is starting to be more aware of what's going on.  She is not nearly as confused as she was the past couple days.  Kelly’s white blood cell count was way down yesterday, so low to the point where we could not have any visitors and she could only have certain cooked foods.  She received a bone marrow shot yesterday which brought up her cell count today.  It is a good thing for her counts to bounce back up that quickly.  If things keep going well, we may be back home by Wednesday.  Kelly is scheduled to get a intratheical (aka chemo delivered directly to the brain) dose of chemo tomorrow morning.  They will also take some fluid out at that time to send to the lab to check and see if the number of tumor cells in her spine has gone down.  If it has gone down, she will only have to receive the intratheical chemo once a week as opposed to twice a week.   She is also set to get another treatment of Gemzar on Wednesday.   On a bad note, Kelly does seem to have another lump starting in her left breast now.  It started a couple weeks ago when we first noticed it.  We showed the Dr this morning and she did not have much to say other then it feels and looks like cancer.   This lump really does not change the course of action and treatment because Kelly already has metastatic cancer in multiple areas of the body.  The hope is that the chemo Kelly just started will help with all the cancer in her body including the skin, lymph nodes and breast along with the brain and spine.   She has a lot going on but this girl does not give up! She is a fighter and we all have a lot to learn from her about never giving up and or complaining about a bad situation.  Let’s all pray that she has a super good response from the Carboplatin and Gemzar treatments (Aka Chemo that goes throughout the entire body)

Kelly still is in a lot of pain, mostly in her spine..this has been the one thing that makes being at home miserable for Kelly and a challenge for me.  I did have a conversation with a pain management Dr. today about what we could do to keep Kelly more comfortable.  I think we have a game plan that could work but we will see.  We also have a new 24 hour / live in caregiver that was with us last week…Kelly and I really like her…This should make being at home a little easier for the both of us. 

  I will try to keep you all posted as things happen.  Thank you for continuing to read the blog and for all the good vibes and prayers!  God bless you all.  
~ Manny & Kelly

Back In The Hospital

This is Manny typing this post...

Because so much has happened since our last post and due to time I am going to keep this as simple and brief as possible. Well it has been a hectic past three weeks since we got home from our last visit to the hospital. Three weeks ago. Kelly and I have had to change our entire way of life because of her immobility. Our living room looks similar to a hospital room these days. Our days are either spent in the house or up at the oncology office in San Jose. First few trips getting South Bay oncology were nightmares because of transportation issues...but Jan Holthouse came to our rescue. She has been so nice and gracious to let us borrow her family's handicap equipped van when we have appointments etc. We also found a very nice live in caregiver (Edna) who has been great the past week for us. But this post is more about where we are now... which is at O'connor Hospital. Things started this past Tuesday. Kelly received chemo on Tuesday afternoon, two new ones (carboplatin & gemzar) along with her normal intratheical chemo. It was a long rough day to say the least. We got home late in the afternoon and Kelly almost immediately started to run a fever. Long story short, over the course of the next two days Kelly got progressively worse. Fever went up to 102.7, had major chills, really bad pain through her whole body and started to get really confused. The Dr's told us over the phone that if this condition persisted that we should get to the ER. I finally got Kelly over to Hazel Hawkins on Thursday night. She got admitted a few hours after they evaluated her in the ER. The docs at hazel felt that because Kelly was a cancer patient and high risk, they did not really feel all that comfortable treating her. They got her on antibiotics, fluids, etc but started contacting our Doctors to see if she should be transferred. They decided yesterday afternoon that it would be a good idea for her to be transferred to O’connor since they are more familiar with Kelly's history. I must say, we were quite happy with our experience at Hazel. The nurses and the resident Doctor (Dr. Minoee) were fabulous. Also must thank Anthony Mojica for being so helpful in getting us admitted quickly and for taking such good care of us during our stay. We got transferred by ambulance last night (Friday) and got into our old room at O'connor at about 8:00pm. The staff immediately got Kelly hooked up to more antibiotics and pain medicine. Because Kelly has some open wounds on her chest from the cancer, it could be a source of infection or it could be that she has an infection in her brain or spinal fluid from the chemo. Could also just be the cancer getting more aggressive. Everything is really up in the air right now. We are awaiting results from lots of blood tests, and spinal fluid cultures that we drawn this morning from her brain port. As of right now, Kelly is doing a little better. Yesterday was a very scary day for everyone…I never felt that scared because Kelly was not responding much to me. Kelly was basically not cognitive for most of the day. She was very confused and tired. Her fever got up to 102.9. Today it’s been back down to 99.5-99.9. The Doctors think we will be here for a minimum of 2-3 days until they can figure out what’s really going on.On a side note, our wonder drug that we have been waiting for (The PARP Inhibitor) that would have been given with our current chemo regimen is not going to happen. We found out on Monday that the drug was finally available but the company that produces it will not let Kelly participate because she is not mobile. Somewhere in the tiny print, it mentions the patient must at least be able to stand and walk a little to qualify for the drug. This is due to the company that makes the drug trying to get FDA approval. It's very political and we are not happy about any of this, but there is not much we can do at this point. Basically it’s Bull S*@% and other expletives that I won’t mention here. Our oncologists say their hands are tied. All I can say is unbelievable!Our main focus right now is to get Kelly better, then get her standing again, then walking so that we can get that drug in the future.

Thank you all for continuing to pray and support us during this time. I know a lot of you want to see Kelly but she is just not up for visitors still in her condition please understand. You can always try to text me if you want to know info, just cannot guarantee I can respond to everyone.

Also want to say a big THANK YOU to all of you have participated on the dinner delivery for...that makes a huge difference for me and one less thing I have to worry about. The food has been great and Kelly and I really appreciate the kind gestures. Thank you to Shawna for setting everything up and for Tiffany helping with deliveries everything else you do.

God bless, Manny & Kelly

Still In The Hospital…

Still in the Hospital as of today, Sunday May 30th.  Yesterday was a tiring day for Kelly.  It started Friday afternoon after we met with a new Doctor,(Dr. Andrews).  He is a Neurologist, Neurosurgeon and he is also specialized in radio surgery, gamma knife, etc which may be treatment options for Kelly’s brain at some point in the future.  His recommendation to us was to get a Ommaya Reservoir (Chemo Port in the brain) installed as soon as possible. This port is where the new treatment will be given from. The port is where the chemo will be injected to the brain and spinal fluids.   I agreed that this should be done quickly so she could recover and get started on the chemo ASAP.  Dr. Andrews mentioned that in order for him to do the procedure, we would have to get a MRI of the entire brain ASAP to see if their was any new obstructions or issues that would stop us from doing the surgery.  Dr Andrews then ordered a MRI of her head that was suppose to take place at 8pm…unfortunately Kelly did not get taken down until after 11pm because of issues the MRI machine was having.  Due to the late MRI, Kelly was not up back in the room till after midnight.  Then she needed to have a special head wash that would be used as a disinfectant for her head to help prevent infection during the procedure.  Most of the night nurses were in and out checking vitals etc so morning came quickly with little sleep for both Kelly and I. The hospital staff came to the room a little before 7:30am to take her down to the OR.  When we got to the OR we met with the anesthesiologist (Dr. Sullivan) and Dr. Andrews to go over the surgery.  After chatting with Dr. Sullivan, we found out he is actually best friends with our other surgeon who preformed Kelly’s mastectomy (Dr. Walsh).  This was weird because they even look a lot a like lol.  I guess Dr Walsh was even in Dr Sullivan's wedding.   Anyway, Kelly then got her IV courage as they like to call it and was off. 

She was in surgery for about an hour.  Dr Andrews came out the waiting room, got me and whisked me into the recovery room.  Normally guests are not allowed in but being that is was a Saturday and no other patients where there they said it was fine.  Dr Andrews and I had a conversation at that point…he informed me that the procedure went well and that it would take about 10 days before the stitches could come, etc.  He then told me some good news…he believes from what he could see on the MRI that Kelly’s two tumors had decreased in size a good amount, almost to where they were hard to see on the MRI (Yay).  He was not able to provide us any new news about the Meningi involvement though, which is what is the bigger issue for Kelly.  Dr. Andrews let me know that they did pull out some spinal/brain fluid during the procedure which will be sent out for testing which may determine how effective the radiation was against the tumor cells in the brain and in the Meningi. 

One of Dr Scates (our oncologist) partners from South Bay Oncology visited with us this morning in regards to what we need to do next for Kelly.  The Oncologist had talked with Dr Scates and agreed that we should wait till Monday to receive her first dose of spinal fluid chemo which would give her a full day to heal from the surgery.  As of right now, we are thinking that we may be going home sometime on Monday afternoon, but this is not a for sure thing…It will mostly depend on how Kelly does after her first chemo treatment.   We are anxious to get home but at the same time because of Kelly’s limited mobility we understand the hospital is probably the best place to be right now.    The nurses are asking that she does not have any visitors at this time due to the fact that she has had almost no rest in the last few days and she gets tired quickly from the pain meds.

The other news we heard is that by Kelly taking the spinal treatments, she will not be excluded from the trial drug she was set to begin called PARP Inhibitor.  This type of treatment is given with two chemo therapies, the major one being Carboplatin.  The initial results from the first trial of this drug was very successful and promising, so we are hoping they drug company will release this drug ASAP and Kelly can begin on that as well. 

Thank you all for checking the blog for the latest on Kelly as I know so many of you are worried about how she is doing.  I will continue to try and keep this blog as current as I can.  Hopefully, Kelly can start writing again soon, when she starts to feel a bit better.  She misses talking and seeing everyone…she loves all of you and appreciates all the support and kind words you continue to bring her.

God bless, Manny

Blog from Manny

Hi Everyone -  This is actually Manny writing this post because Kelly is very tired and under lots of anxiety, stress and the like at this time.  I wanted to give everyone the latest update on our situation as it’s impossible to answer every call and text.  I think Verizon is going to be very happy with us this month, hopefully Kelly has us set up with unlimited minutes and texts lol.  Well...I will try to make this short and sweet as I am not nearly as good of a blogger as my lovely wife.  

It started on Monday afternoon when our primary physician recommended that we go to the ER ASAP because Kelly was experiencing a high heart rate (125-130) and she was loosing almost all function of her lower half, walking was becoming impossible.  So we drove up to O'Connor hospital at 10:00pm on Monday night.  Much to our surprise the ER was crazy packed...more then 50 people ahead of us.  Kelly got frightened at this point and began to get very upset (caused by steroids mostly).  Well my mom (Adela) was somehow able to talk the nurses desk into getting to Kelly right away.  By 11:00pm we were in a ER Room.  Unfortunately, that was just the beginning as they had to ran a multitude of tests on poor little Kelly.  They finally decided to admit her at 6:30am..what a long night. 

Since Monday we have been in the Hospital running more tests.  The Dr's could not find anything wrong so they figured to truly know what was happening they would need to perform a lumbar puncture(spinal tap) to get fluid from the spine to check for cancer.  That was done on Wednesday and as of right now (Friday afternoon) we don't have the final official pathology report.  However early reports are showing about 50% of the cells in the spinal fluid are showing suspicious stuff...which they believe is the breast cancer cells attacking the good cells.  Our Dr (Skates) has told us we basically only have one option for treatment, which is a special type of chemo therapy that is injected directly into the spinal fluid.  This can be done two ways..first is by way of a spinal tap in which Kelly would have to come to the hospital each and every time...not a good way to go being that is so painful.  The second option is we have  port put in just under the scalp of her head. This procedure will need to be done by a neurosurgeon here at O'Connor.  This option will make things much easier in the long run for Kelly's future treatments so I think this is what we are leaning towards.  The neurologist on staff here is suppose to meet with us sometime this afternoon to talk about the procedure.  This new information does leave us in a sort of dilemma because Kelly was scheduled to start a trial version of a drug called PARP inhibitor next week, but our Doc believes by doing the spinal treatments she may not be eligible for the trial.   Hopefully this is not the case but it might very well be.  I wish I had better news but it just seems like we keep getting hit with stuff we don't want to hear.  Hopefully, god willing, Kelly will get the procedure done soon and get the treatment she needs and be able to get home.  The tricky part will be getting the house set up well enough so that she can get around easily being that she cannot walk.  We have a home care case manager looking into getting us special home supplies to make the transition easier. 

Well everyone, now is the time we need all your positive energy and prayers the most.  We cannot give up this fight because I know Kelly is not giving up!  She is the strongest women I think most all of us have ever met and she is a inspiration to everyone.  She is my wife, my hero ,my everything and I will do all I can in my power to get her back to health.  Thank you for all the support you have given her over the past year...this blog has been one of the big reasons she has done so well through all of this so I thank you for reading and staying current on our situation. 

We love you all!  God Bless.  Manny Freitas

Also here are some awesome things Mark Silva has done for Kelly. His new tattoo with her name also a new addition to his paddle board. Awesome!

Also here is a picture of Kelly in the hospital.

Tough Times…day by day

Note: please excuse the typos & grammar issues. 

I am about to have a physical therapy session with Manny and thought I would write a quick hello to you all.

My body is slowly getting worse and we are looking into at home care to help with all the stuff I need because it’s been Manny doing all this stuff for me and that is hard for him. I am constantly working through this in my mind and body but the steroids are very difficult and also make you very depressed even crazy so it’s a tough battle. I will get through.

So if you are not hearing from me or I am not totally “there” please understand it’s the steroids. 

Thank you for your continued support we truly appreciate it and need it.

Smile.

Kelly & Manny Freitas

Happy Anniversary to US! XOXO

Today marks one year since Manny and I said our vows. It is such a time to appreciate the love we have for each other, which we have. In this circumstance we truly see how much we love each other. However, it coming bittersweet, because my energy level has shot way down. My legs are literally giving up right now and I am I having a very hard time walking and he has to help me up walk and such. It could be so many things. I am thinking mostly steroids, but we will be calling doctors of course to let them know and possibly get someone here to start working with me on rebuilding muscle.

More beautiful pictures from that day taken by Jill Johnson Photography

It's annoying for me because I am not the person to sit and not move but right now my body is telling me- well forcing me to. I have fallen a couple of times, which is not shocking for me( I am klutz) it's the reason I am falling. Lack of strength rather than coordination. So just another road block I must get through. It's a hard one.

We took a little getaway, thanks to a dear family friend, to a place called Dolphin Bay in Shell Beach CA. It was well deserved for all and needed that down time to not think and just relax. Golf, Spa treatments and rest by poolside. ahhhh. Enjoyable to say the least

We also did the traditional 1 year frozen cake top tasting for the anniversary. We couldn’t remember the cake flavor, it was chocolate. Surprisingly it was very moist and not as bad as we expected it to be. We’ll thank Annie Goularte for that, supreme cake maker! ; )

As you can see, I have also lost my hair again due to the brain radiation, which was  fine this time around. Easier the second time around for sure. Experience is key.

Thanks for reading what we have been up to. Enjoy your day!

Smile!

Kelly & Manny Freitas

Trying to find peace

We sit at home in a quiet home, our home has been a bustling grand central station since yesterday. I have just gone from Minor League to Major League, I have to be that much stronger work that much harder to get through this.

From the begining:
My first Doxil I went through with flying colors, felt so fine that I had house guests and a BBQ with the family in my house. the only thing I did notice was a bit of back/spine pain. nothing too major.
My second Doxil was April 7th was feeling very tired by thursday and a complete wreck on Friday the 9th at first I chalked it to chemo side effects. Until they got so back we had to call the on call Doctor on Saturday evening, Manny even almost took me to the ER. I had every sypmtom in the book. By Monday spoke on the phone with my doctor phoned in some prescriptions then had another appt on Wed. They started to think I had spinal meninghitis which could be deadly. Tested my blood and the bacterial version was ruled out. But even still this wed I still had symptoms. So they were leaning to viral meninghitis. So they sent me to the ER for a spinal tap(lumbard puncture) but wanted me to have an MRI to brain to rule out possible brain tumors. Which I secretly felt could be an option, how could I be as sick as I was/am and Manny not get a single thing. So off we went to the ER at 1pm yesterday, they did what they do as I laid in a private room obviously meant for kids. Finally rolled me to the MRI department for a brain scan and by 6pm found out I had brain lesions (2) so no need for a spinal tap the tumor was causing most everything. Neck/Back pain,headaches, high fevers, vomitting/nausea, dizziness, loss of appetite, constant anxiousness, to name a few. Great! Checked out by 7pm home by 8 or so.

This morning I received a follow up call from my oncologists office to give me more details like my meningi's are also swollen, the lining of the brain is also part of the situation. I need full brain radiation ASAP(lined up today start tomorrow) Stopping chemo and with the little success I have had and the fact that it's in my brain (and quote) I have "a few months" WTF... that's the scary part how do deal with that. Part of me wants to say screw the dr's the hospitals and fly somewhere anywhere and love my hubby. Of course the other part of me wants to fight for my husband, he doesn't deserve this, with our 1 year anniversary just around the corner. Neither does my family, I need to do this for them. Yes I want to survive, ofcourse I want to grow old with my husband watch my nephews and neice grow. At this point I wont even be selfish about having babies for us. I just want to live mostly for them but for me too, I am not sure I am strong enough to realize "a few months" Who can? How do you really weigh it?
Well part of me fighting is because if I didn't I would be dealing with a lot more painful symptoms. Not sure I can handle much more pain, to my body and my soul. I know I need to be strong but for the first time ever it's not coming naturally...Fear has really been my main feeling, even I don't know what to say. Most the people who I talk to feel that way, don't worry I do to.

As of right now I am feeling like it's not real and have a ray of hope in radiation.

Thank you for all your prayers, thoughts, hugs, kisses, smiles, tears I feel so special to be as cared for/loved/or liked enough to have so many people on my side.

SMILE!
Kelly Freitas

Good Bye Sushi

I start chemo tomorrow morning so that means good bye to sushi, hello hand sanitizer!

I will be back to carrying hand sanitizer with me 24/7, drinking lots of water and eating crackers. I am currently looking online for another wig, just to mix things up. Maybe a long one just like my hair used to be. Although, when I had no hair I always felt much more comfortable wearing my headwraps...especially in the hot weather.

I spent the afternoon with my sister and mother enjoying my last sushi lunch until chemo is over. I was supposed to clean my house a bit and organize my loft, that can wait.

Wish me luck and hope for least amount of side effects. Hand Foot Syndrome does not sound fun but then again neither do the other side effects on the front & back 8.5 x 11 sheet of paper.

Until Next time

SMILE!
Kelly Freitas

The Plan

Well the new plan anyways, not really the plan I envisioned but a plan nonetheless. The extended plan to my cancer free life. I am doing chemotherapy first. (phew) The last thing I wanted to do is have surgery again especially one that cuts open my breast plate. yucky! There is a new drug that is currently being FDA approved that coupled with chemo has shown significant improvement on doing away with Triple Negative breast cancer. I am a candidate for trial use of this drug and I will be doing it. It's 2 types of chemo drugs plus this new drug- problem is, it is not for use for another month or so. So in the meantime my doctors do not want to wait and I will be doing another form of chemo to attack the cancer, but not remove me from the trial. Now I wait to get my chemo schedule I am assuming I will know next week when I begin.

I am not scared going into this chemo this time around, because I know what to expect. However some of the stuff I am expecting is still a dark cloud over my head. Hair loss (just when is was coming back), metallic taste, fatigue, nausea, yucky all those things(plus some) back again. But the return in investment seems much better- my life, can't beat that.

It's a strange thing this disease, from the outside I look healthy as ever, maybe a bit of weight gain but healthy. My skin and nails are the healthiest they have ever been. I have rosy cheeks decent energy it's been forever since I have even had a cold. But then there is cancer inside me trying so hard to take over. Most people see me and tell me how good I look and that makes them feel better. It's concept no one, including myself, understands she looks fine so she MUST be doing well. I am hoping and have a lot of confidence these new drugs will have my inside match my outside appearance. That will be a great day.

I am impatiently waiting for sunny Summer weather to arrive, until then I am savoring what fabulous jewels Spring brings. Beautiful white tulips on my coffee table, the rainy days that have my sweats and hot coffee screaming my name, my grass so green my husband enjoys touting that "we have the greenest grass in the neighborhood" so proud of his hard work which always makes me realize the grass is greener in my back yard. My white dog who always seems to find the one mud puddle we have and plays in it the day after we give her a bath. That always makes me laugh and bit irritated all the same time.

Until next time!

SMILE!
Kelly Freitas

The Desert

Well I finally got my results from the PET scan today in the late afternoon. Just as I expected the bump under my arm is a lymph node with cancer, actually two little ones that feel like one.
The scan also showed 2 other lymph nodes near my chest wall. The good news, no major organs are involved. Besides the skin and the 4 lymph nodes that is all they found. The bad news, if, actually when I have surgery they will have to cut my breast plate open to get to those lymph nodes and also remove lymph nodes under my left arm also. So it's a much more invasive surgery than before.
Some other news, I will have to go on chemotherapy again. It is two new drugs they will be using on me this time. I see this a good and bad. Bad I have to go through chemo again- good that I still have a "weapon" against the cancer. My worst case scenario with this PET scan would have been if they told me it was in my organs and that I couldn't do chemo. Neither of those things happen. To add to the punch, I am going to call another Dr out of San Francisco that focuses on anti-cancer diets and acupuncture coupled with chemo. I am ready to pull out all my weapons on this cancer...even if it means giving up Starbucks (YES that's right people I said give up Starbucks! I mean business!!!)
Actually I feel better after my appt, yes it means a longer road but it's a road not a road block! Just a reminder for me to be grateful of all the things I have, people I love and trust in God to have method to all this madness. This Sunday Manny and I went to church and the sermon seem to hit closer to home than most. Father Rudy spoke of Jesus being sent through the desert and being tempted by the devil and he came through a long time of temptations and hardships. He explained that everyone has their time to spend in the desert but if you trust in God he will deliver great things and there is a light at the end of the tunnel. I am still in the desert, I know I will, I know I must get through this. God is on my side. My husband is on my side, My parents, My siblings, their kids, friends I sure have a lot of people on my side.

Thank you to everyone who posted comments here and on my Facebook wall, I may not always respond but know that I am reading and truly appreciative. Manny and I are really in awe of all the support you all have given us.

SMILE!
Kelly Freitas

Curve ball

I probably should have taken up softball or baseball, I might have been more prepared for these constant curveballs...

My final days of radiation have been postponed. The reason, well, because the infamous rash like bumps have appeared outside the radiation area. Also Tuesday morning I found another lump under my left arm. (My original tumor was on my right side.) There I was in the shower, where at least one week I give myself a check up. It's really stupid and scary all at the same time you feel around hoping you won't feel anything and every little bump makes you lose your stomach. Well Tuesday morning I felt a lump and I definitely lost my stomach. Manny did ask me "what's wrong" that morning and I hid it from him. I didn't want to scare him and I didn't want it to be real. So off to radiation I went and as I am laying down on the table my doctor noticed my rash bumps outside the radiated area right away, which alarmed him. Then I forced myself to tell him about the lump I found earlier that morning. The look on his face for some reason made me very upset, and while I was not crying at that moment he told me "you are very strong!" it was then after he said those words I start to cry, I couldn't hold back any longer. First time ever crying in the doctors office since being told I had cancer. I was trying so hard to stop but I couldn't. I didn't want to be the person that cries and the other person feels like they can't console because you don't really know them. Even worse I felt so horrible for my favorite nurse who I could tell I upset, bringing me tissues and looking away trying to not let me see her upset.

Well I finally calmed down. The Dr explained to me he is going to call my surgeon and oncologist before he moves on with radiation that PET is a must at this point... to see where else it may have travelled and to confirm whether or not what we found is what we think it is. UGH.
So Friday morning I will have my second PET scan. Please pray that what they find is nothing.

Thanks for reading, and I apologize if this post is a bunch of rambling.

Until Next time,

SMILE! (and please pray!)
Kelly Freitas and Manny too!

Red Spree

So with only 7 radiation treatments left I am SO ready to be done with these treatments! I had to take a 2 day “break” from radiation because I was in major pain and getting fevers. It is nice not to have to wake up and head straight to the hospital everyday, but really it just means I have postponed the end date 2 more days. Since I am ready to be done with this I would almost rather not have this “break”.  My skin shows all the signs of radiation treatment, red, blisters, dry flaking skin, sore and tender. I am lucky most of the feeling in that area is numb, but the places I still have feeling boy does it hurt, sharp pains waking me up in my sleep or feelings of the worst bruise I have ever had. I try and wake up everyday geared up and ready to go. Put on my heels and walk into that hospital with a smile. In fact one of my favorite nurses joked with me the day I wore Uggs to treatment…”You must not be feeling well; you’re not wearing heels!” She was right that was the day I came in with my white flag and said okay you win! That was also the day they told me I needed a break. So really who’s winning-the cancer? Not if I can help it.

When I was 10 years old my parents bought a Red Honda Spree moped. I believe it was supposed to be for my sister but we all got to use it. We took it camping a lot. So much fun to drive that thing before I really was even supposed to drive. Well I never forget the day my father taught me how to drive that scooter. I have spoken about this day to many people as an example of how I was raised, how my parents always pushed us to do better. Well there I was 10 years old and probably had no business being on a scooter at the time. My dad wanted me to learn to ride it and so did I. He took me down the street to a developing neighborhood with empty lots and a newly paved street. I had on my red helmet got on the scooter and could barely touch the ground to keep it from falling over. I first learned to start it, then he showed me how to give it gas to go and how to break. My hands where a bit shaky when I took off, a little wobbly clinching the break every so often to slow myself down. I finally got to a dead end where I had to turn around. My dad yelling “Okay turn around” and I was terrified because I knew this was going to be hard. So I slowed down and began to turn. Instead I fell to the side scrapping my leg and the new paint of the scooter, my dad came over picked up the scooter and helped me up. I was crying not only because it hurt but because I was scared. Then he looks at me and says “Get back on!” then he smiled. I said “NO”, be he insisted I get back on and try it again. I cried and said “no” but that didn’t bother him. He insisted again that I get back on and try it again, so I did. Terrified I got on the scooter and tried and tried dropping the bike a few more times on myself. Crying and arguing with my dad that “I just can’t do it” he disagreed and kept insisting. Then finally I made the turn with out falling and did it again and again. I was so happy I went from crying to laughing, still a little bit scared but so happy I finally did it. Little did I know that my lesson in scooter driving would eventually lead to a lesson in life. I am now on this different ride and so ready to get off but I know I can’t I must keep going-keep trying so that when I do finish I will be happier than ever. “No pain no gain”, “What doesn’t kill us makes us stronger”, many sayings and phrases that I live by now. I now that the outcome will be so grand I will be smiling ear to ear. I must have patience waiting for that day. Patience-not one my better qualities.

I more recently have also been so focused on all the things I “can’t” do. Things like, I can’t work, I can’t swim, I can’t start my family, I can’t loose weight, I can’t keeps ringing in my ears. Bothered so badly at what I have been going through. I know this is not good for me so I haven been trying to focus on what I can do. I can meet my sister for lunch, I can take a nap in the middle of the day when I don’t feel well, I can go for a walk, I can sleep in, I can do lots of things. I just need to remind myself all the things I do have not what cancer has temporarily taken away from me.

Get back on that scooter and keep going.

Until next time,

SMILE!
Kelly Freitas