Update on my dad

[Lisam81]

So I’m not sure what happened to my other post but since a few are still asking I wanted to do an update again. I wrote in the last one that my dad was intubated on a breathing machine and moved to CCU. Yesterday I promised my dad that tube would be coming out. I didn’t know how or when but I knew it was going to happen one way or another if I had anything to do about it. They weren’t going to remove it though especially yet since his face, arms and chest ballooned to 3-4 times their size in swelling, though his radiation oncologist suspected the breathing machine was placing too much pressure on his SVC syndrome. I almost didn’t even recognize my dad he was so swollen and huge. I stayed yesterday until 5:30 pm for visiting hours and then visiting hours are again from 8-9 pm so I went back. I told him this fight was not over and he shook his head in agreement. I told him the breathing tube will be taken out and he shrugged and I said no, it will be, you will not stay on this forever. Today we called in his pulmonologist from months before, again. His team made the decision to pull the entire tube today against what the hospital pulmonologist wanted!! They stopped most meds and tube was pulled. My dad was able to breath perfectly on his own, his heart rate came down to 80 and the swelling is going down. His pulmonologist made the decision to extubate him so that he didn’t weaken where he couldnt breathe on his own, which would have happened quickly. Tip - whether you need a pulmonologist, cardiologist etc during your cancer journey, establish with them anyways!! I pushed my dad to establish months ago with these excellent doctors. I told him if he ever needed them he was already their patient. Today one of those doctors I pushed him to establish with months ago made the best possible decision for him against others. His cardiologist I had him establish with we also brought into the hospital and he pulled meds, stating he was on med overload for his heart. You may not need these doctors now, but establish anyways!!! You never know when you will need these doctors who know YOU in a sea of doctors in a hospital who don’t. It is one of the best things that I made my dad do - and he was dragging his feet on establishing with this pulmonologist who saved him today with the breathing tube!! I kept on him daily and never stopped until he finally established with him. Best decision ever. He was on propofol and so many others that his pulmonologist said to continue cancer treatment he needs to be strong. If he had stayed intubated, like they wanted at hospital, he would weaken so much that cancer treatment wouldn’t be an option nor might breathing on his own again be either. It worked in my dad’s favor. I also met with risk management again today. They are aware my dad wants cancer treatment and they are further investigating the issues we have had with hospital. This cancer and care has been a battle but today was a positive day.

And if anyone is considering Foundation One genetic testing, do NOT hesitate on it. They were wonderful, their staff has been wonderful, patient advocacy is wonderful. They told me 11/9 for results and then moved it to 11/13 the day before. I initially was upset as my dad’s radiation oncologist was having a meeting today on my dad’s next step. They worked with me to get it finished by Friday evening, ON schedule. They kept in touch with me, emailed me, and everything was able to stay on schedule for my dad. I am more than pleased with Foundation One and I highly recommend them!!

It’s 1 step forward and 3 steps back, but little by little we are making baby steps. The biggest thing is my dad is NOT giving up, fighting like crazy and I am amazed every day at how much his strength and willpower. I don’t know the outcome but I will say this has been one heck of a journey and it’s not over!

Oh, and for those who don’t know my dad is stage IV NSCLC adeno, stable on Alimta maintenance since 2/28/18 and then went into leptomeningeal found out after 10/16 - has been in the hospital since 10/16. 15 IMRT to chest tumor, 10 whole brain radiation treatments and 9 spinal radiation with 10th and final one hopefully tomorrow. He is still in CCU but may be moved soon. He has been through SO much since 10/16 but just keeps on going and so do we every day for him. Oh and he does not have EGFR detected but Tarceva is still being considered as second line without EGFR for the leptomeningeal and since his options for a lot of systemic treatments are not really options right now. He was found to have 2 genetic mutations - APC and TP53.

[judg69]

Lisa, your Dad and You are both tremendous fighters! Absolutely you both are in my prayers, judg69

[Lisam81 in reply to judg69]

Thank you so very much and for all of your support!

[Ncpoet]

So glad the other doctors came in and did what was best for your dad. Will keep praying for him to have the strength he needs since he wants to keep fighting. If I had a daughter, I would want her to be just like you.

Judy

[Lisam81 in reply to Ncpoet]

Thank you, Judy, for your prayers, kind words and all of your support!

[ThePurplePlace]

Lisa, That'smazing!!! His results are like a miracle. Hope they continue 🙏 and he remains in comfort and without pain.

It's great that you have some wonderful doctors who are fighting with and for him.

I totally agree about Foundation Medicine. They are excellent and I consider them the best. If/when I have further progression and have a need for another biopsy, I will have tissue sent to them for a full genetic profile. Cancer mutates and can change overtime and with treatment. New testing can possibly lead to new treatment options.

I'm now also planning to complete and sign my MOLST (Medical Orders for Life Sustaining Treatment) forms. I have had these for months and keep putting it off because I'm stable. But, knowing and seeing just how fast that can change, it's very important to me to complete this.

I want to be certain that my family will never have to make any medical choices for me. I know what I do and do not want and this is something I've thought about for a long time. I realize now how important this is and I now feel these are things every one and every family should do when we are well and able. Such private and personal choices are very difficult. I don't want my family to have to ever wonder or guess. It gives me peace making these on my own so they'll never have to worry.

I lost my Dad any my brother both very young and suddenly. My Dad had a massive heart attack and my brother was killed in a tragic accident while on vacation in Antigua. Life can change in s heartbeat. It was very hard hoping we were doing what they would have wanted. We never talked about it and didn't know? I can't do that to my husband or my boys.

On a happier note, I'm thinking of your Dad and am very happy he is no longer intubated and is breathing on his own again and hope now he can resume treatment soon and continue to beat this horrific Illness. 😞

Take care...

Lisa

[Lisam81 in reply to ThePurplePlace]

Hi Lisa, yes make sure your family knows your wishes. My dad didn’t have anything in writing but fortunately I have been with him every step of the way, day in and out, and I know his wishes and him so well. I feel confident the correct decision will be made. But not everyone would know that so it’s a good thing to do. Thank you for all of your help and support for so many months ❤️

[ThePurplePlace in reply to Lisam81]

You're an awesome daughter....

[Feelingblessed2013 in reply to ThePurplePlace]

My doctor handed me the MOLST form after my second LC diagnosis. I kept putting off filling it out as well, but I did finally get it done. I also have a health care proxy, and a living will with all my wishes laid out. Like you, I don't want my family to have to guess about what I would want.

[ThePurplePlace in reply to Feelingblessed2013]

I have a Living Will and Health Care Proxy, as well. I did it to make things easier for them. 💗

[Feelingblessed2013]

Thank you for the update. I am looking forward to the post saying he is out of the CCU and continuing his cancer treatments. Your dad is a very strong man, and he is very lucky to have such a strong daughter.

May your post serve to remind us all that it is always best to have our own doctors in charge of our care. The hospital's doctors may be excellent doctors, but all they know about you is what they read in your medical history or chart.

I will keep you and your dad in my prayers. 🙏

[GMC1]

Lisa, I see you already have many replies. I have not read them yet but I will and I expect some of them said what I am about to say. He has needed these other doctors all along. I didn't know how to express it nor did I want

to demenish your trust in your radiologist who was so much help to you.

BUT, I say yea!! Sounds so much better.

Lisa, when you get home please make some of those decisions for him until you know for sure he no longer needs you to, i.e. Home Health care.

[Lisam81 in reply to GMC1]

Hi Gloria, he has had all these doctors for him all along, even before the hospital. It’s just what I meant was once you get into a CCU or ICU their critical team wants to take over and be the only doctors. We fought to have his pulmonologist in the CCU and make a decision against the critical care doctors. It worked initially in his favor. As far as medical oncologist my dad was never allowed to have in that hospital. No oncologist would see him and an outside oncologist was going to see him until he found out he had leptomeningeal and then he cancelled his appt. his radiation oncologist fought for my dad to have a medical oncologist, I founght for 4 weeks to have a medical oncologist, went to CEO, risk management. They wouldn’t. But we were finally getting somewhere after my dad had 1 more radiation treatment this week and he was looking at possibly Tarceva. But he kept getting major setbacks and was not in any condition for systemic treatment especially chemo. So radiation has been his only option until recently it appeared he was getting stronger. We had a plan in place for after his last radiation which was supposed to be yesterday. He couldn’t do systemic treatment while on whole brain radiation and spinal radiation. So this week we had a plan in place and his radiation oncologist was taking my dad to a large meeting and higher ups to force someone’s hands in that hospital. If it wasn’t for his radiation oncologist my dad would have had no one, so I thank God for what he did for my dad when everyone turned their backs on him once he was diagnosed with leptomeningeal, INCLUDING his oncologist at Moffitt and his Moffitt oncologist. Not to mention Moffitt has not even called to check up on my dad once. Even Baptist MD Anderson, who initially talked to me about treating him with leptomeningeal eventually stopped returning my phone calls and blew me off. It’s too late now though. There’s more to this story and hard for others to understand but it’s been a huge battle and fight and one that I just couldn’t win no matter what I did or who I went to. But my dad needed radiation first, and that he almost finished.

[GMC1]

Forgot! How about a new good medical oncologist who will be there when you need him. Ask the Pulmonologist and cardiac doc for recommendations.

We are moving back to Alabama because we both have bad allergies to Juniper plant and they are all over town. Only male plants put out spores but those spores can travel miles and miles. We are in desert climate and people plant them all over their yards. I believe this allergy, after being tested, is why my husband had to go on oxygen right after we got here. I have been hospitalized once when it turned to an infection. A year in this climate is all we can take.

Such good news. Hang tough lady, many prayers coming your way.

Gloria