Monday, July 26, 2010
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!
Tuesday, July 6, 2010
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!
Wednesday, June 30, 2010
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
Thursday, June 24, 2010
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
Wednesday, June 23, 2010
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
Monday, June 21, 2010
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
Saturday, June 19, 2010
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