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