Long but Final Words

[ko1300cc]

Thanks guys for all the nice words. I can’t say it has been easy these past few weeks. The feeling of loosing someone so close to you like a mother is absolutely indescribable. The amount you miss someone who is gone too soon at age 46 is impossible to value and the yearning tears you up inside. I have gone back to work and it certainly helps get your mind off of it. But these temporarily lapses of working and going to gym and socializing with family, significant other and friends are not a resolution to the amount of pain you feel from the loss. I come to realize that the nature of grief comes in waves. At first my brain was flooded with the raw intense emotions of her last days of pain and suffering and it’s pretty hard to get over that. Now the shock has worn off and I came to realize that I am 26 year old who will have major milestones without a mother present to see them. That is incredibly heart-wrenching to me and my younger sister.
I feel like I owe it now to everyone to tell them how my mom passed away. She was post HIPEC and had 3 sessions of mop-up folfiri w/ erbitux. She could only tolerate those 3 out of 5 and decided to stop right there. She had a month off and then a scan in December 2013. Her scan wasn’t a success but didn’t look so dire either. 3 LN’s light up and were questionable for cancer. Doctor said let’s wait and see what they truly are, perhaps they are physiological or an inflammatory response. So, absolutely no chemos for now because it’s the holidays, relax and enjoy yourself with family. That’s when someone planted the idea of a rural clinic in Germany that does all these interesting and groundbreaking therapies that are not offered in the states which truly benefit the patient. I was incredibly skeptical but who am I to convince a stage 4 patient of what’s right and what’s wrong. My mom was desperate and chemo was something she no longer wanted to do.
New Years Eve came and went and my mom was doing great. She was energetic, back to her normal weight and full of life. She had a blast during NYE and stayed up until the wee hours of the morning partying with my father and the rest of the family. January 6, 2014 was to be the departure date to the Hallwang Clinic in Germany. She was very hopeful and excited and couldn’t wait to see parts of Europe with her husband.
She arrived at the clinic and was getting acclimated with the people there and the guests. She had called me a few times and told me how nice all the Australian patients there are any how much she loves their accents. She was enjoying the food and the company and even the rural landscape. She had finally talked to the head doctor there about her case and he seemed optimistic in helping her with all sorts of therapies in boosting her immune system. He started off with hyperthermia, ozone therapy, IV supplements and monster doses of thyroid medication. She seemed to somewhat tolerate it and even travelled with my father to parts of Germany and France by taxi. Things were going great and she was scheduled to come home on January 31, 2014. For some odd reason they decided to move their departure date to February 14, 2014 after the doctor suggested that my mom get more treatments. So they unfortunately obliged and agreed to pay the astronomical cash payments to the clinic. Later they started her on with a drug called Removab. A drug that isn’t FDA approved in the states but have some approvals in Europe. They seemed very excited to start this with her and then do some chemoembolization.
So when my mother was explaining all of this to me on the phone, I was getting incredibly worked up. I told her I thought the purpose of this trip was to boost your immune system with some supplements and travel through Europe and enjoy yourself. She had told me to leave it be because I am upsetting her by not having hope in these treatments. So I dropped it. We talked everyday and she talked about her experiences with the people there and her treatments. All of a sudden something strange started occurring. My phone calls weren’t being picked up by my mom or my dad. I figured well they are probably enjoying themselves and they are relaxing they will call me back. I started to fear the worst when 5 days went by and I haven’t spoke to my mom. Eventually my dad called me back and I demanded I speak to mom and he kept giving me the run around telling me that mom is sleeping and she will call you later. This persisted for 3 straight days until I didn’t buy it anymore and demanded that my dad give the phone to a doctor. Doctor got on the phone and tells me “your mom has c diff, don’t worry everything will be ok, she’s fine”.
The next day I booked 2 tickets to fly to that Germany clinic the following week. It was a 7 hour flight to Frankfurt and my dad picked me and my sister up by taxi and we had a 3 hour ride to the clinic. When we arrived and entered the tiny rural clinic we were forced to put on gloves and other protective aprons and gear to protect my mom from further infection. I walked into her room and she’s in the bathroom. When she walked out the bathroom my heart dropped to my stomach. She had lost so much weight within those 6 weeks that she was there she was practically unrecognizable. She had swollen legs, abdomen and hips from the inflammatory response and it was an ominous thing to see. She couldn’t hold food down and was constantly vomiting. They had her on the correct antibiotic regimen, but kept toying with me on how serious her condition was. “Don’t worry she is doing much better”. My sister and I stayed with her for a week there and fought tooth and nail to try to get her to start eating regularly and walking. All of it was no easy task. She couldn’t keep food down and couldn’t walk longer than 3 minutes. She also developed the most severe panic attacks.
My sister, dad any me left sometime in mid February to get back to work and make sure everything is fine at home. My aunt, moms sister was on her way to arrive the day we were leaving, to help her for an additional week. Same thing, very little progress with my mom, very little eating, walking, vomiting, panic attacks and now trouble breathing. My aunt went home and my dad arrived same day my aunt left. A lot of money towards flights and the clinic is charging my dad at this point $150,000 US dollars in cash. I couldn’t fathom the fact that my mom would never be able to come back. I was in contact with my dad and he had informed me that they were urging her to leave back home and she needs to get back to her family and change scenery. So on March 8, 2014 the C Diff bacteria was no longer present in her stool and she was to fly back home.
The flight back home was so nerve-wracking because she still had edema from the inflammation from her infection and now pleural fluid so I was worried about possible blood clots and other issues mid-flight. I was worried about her being on oxygen and making sure she had enough saturation in that atmosphere. I called the airlines and they couldn’t accommodate it for free. $4,000 they said. Well I called the clinic and spoke to my dad and they recommended that she doesn’t even require the oxygen she will be fine. Jeez it burns me up just thinking what kind of criminal scum these people at that clinic are.
Anyways I woke up in the middle of the night and my paranoia prompted me to check flight tracker to see that the flight wasn’t diverted to the nearest airport from her having a medical emergency mid-flight. So far so good. I fell back asleep and my dad woke me up telling me they arrived with no hiccups and heading back home. Hallelujah.
March 8, 2014 she arrived and I looked at the final report from the clinic. $200,000 total dollars later and she came home with pleural effusions, and found out the reason I haven’t heard from my parents for those few days was because my mom formed severe sepsis from her C Diff infection. Damn near died in a random Rural German Clinic with shady therapies that are not approved.
March 10, 2014 she is rushed to the emergency room in excruciating pain and scans are run. The attending comes in and says bowel perforation. We say no way we had this scare before call the surgeon over let’s talk. Surgeon comes in and looks closely and determines it’s just an ileus. Surgeon then walks into the room and mentions do you have end of life plans? My mom was flabbergasted by that statement and turned to me and says in Russian “what the hell is she talking about.” She showed us the scans and her liver was about 50% covered in lesions, major pleural effusions that needed draining and some tumors on her abdominal wall again. How is this possible? 2 months ago she just had 3 LNs that looked suspicious. We told her we will talk to our oncologist asap took all her suggestions on how to get her bowel moving again, left with pain meds, enemas and suppositories.
1 days later back in the ER, excruciating pains again and back to her Cancer hospital. Again doctor says she has bowel perforation and with her condition there is no way she would be able to survive surgery. Comfort care from now on. We said we heard this story already last night she has an ileus and ate too much last night. It’s probably those pains popping up again. My mom continued to vomit and suffer that night. The next day she gradually got better and the oncologist said to me he wants to have a family meeting. I told him my mom is full of hope and her whole family is there. Please try to be as compassionate as possible. So he came in the following morning and said well as you know it’s an ileus and we have to treat that and your pleural effusions and we have some ideas to help that. As far as your cancer I want you to try to get more calories in and be able to walk and spend time with your family before we consider one last option for chemo. A glimmer of hope instilled into her and my family. I saw it as a false sense of hope, something that would make her have hope and keep fighting this horrible battle but ultimately do nothing.
She stayed in the hospital for a few days and went back home. Pain everyday from that point and I was absolutely depressed seeing her like that. I remember walking outside my mom’s house telling my girlfriend these are the final days I just know it. She can’t eat, she is in constant pain and she can barely breathe. How on earth will she be able to bounce back and start chemo. These are signs of the end and we should call in hospice.
March 17, 2014 she is rushed to the hospital again with horrible pains and violent vomiting. Scans are done again. Bowel perforation, this time for real. No ileus. She has 2-3 days left surgeon says, we don’t recommend trying surgery because her chances of survival are very small. So comfort care from now. I have never been hit by a ton of bricks but I sure felt like I did that moment.
There were some incredibly deep and personal conversations made with my mom at that point with myself and my family. There were about 30 of us in the hospital that day. Both family and friends anguished and anticipating grief. She was kept comfortable with high doses of dilaudid and ativan. As her bowel was spilling out contents inside her body we spoke and then the end was very near. She fell asleep and was breathing rapidly and deeply and then poof. I saw her take her last breath; I kissed her on the forehead and walked out the room. As I walked out I heard screams in the room and the women in my family including my sister, mom’s sisters, and her mother were burdened with sadness.
It’s incredibly powerful to see your mother who gave you life take her last breathe and vanish into what we as humans can’t seem to grasp. Where is she? I don’t know, I hope somewhere comfortable and free of suffering and pain. This pains me to even type, but I feel like I have to.
Her funeral had close to 300 people. That’s the amount of lives she touched and the amount of people that respected her. Sometimes I feel like she should have died in Germany from her severe sepsis, but she held on and kept fighting to die at home with her family.
I talk to her all the time; I keep a journal and write as if I am speaking with her. That’s my coping method, that’s how I stay connected. Grief is incredibly personal and there shouldn’t be a set of rules or dictations on how to handle it. As long as it’s not self-destructive who cares right?
I will keep logging in to check up on people and see how things are going. But I know I will eventually want to stop because the pain is too much. I truly wish everyone here the best, and although I don’t know any of you personally, I love you all.

[Lee]

I am so sorry for your loss. Your mother sounds like she was an incredible person who loved her family and her life.

I hope in time, the pain will subside and that you will only remember the good times with her.

You and your family will be in my thoughts and prayers.

Lee

[Cat]

I am so glad you posted.
If it helps any, I am sitting here sharing your pain, as I am sure everyone will who reads this. As the mother of a grown son, I can tell you that your mother would be so very, very proud of you.
You are a remarkable guy....I wish you peace, my friend.
Cat
dx:2010 stage 111cc
currently ned

[vilca11]

My dear child,

I can't really find the words to respond to your crying heart, but just wanted to say that I was crying with you reading thru the pain and horror your beloved mom, you and your family went thru. I know, my only daughter, my only relative, will go too thru the similar nightmare and separation pain soon. I know that I would want my child to get on with her life and accept the pain, suffering and death of her dear mom as a part of life. Yes, talk to your mom in your journal, who knows really what happens with the human soul after we transition from life into death... The studies about NDE show amazing statiistics - regardless of culture, religeon, etc all study subjects (thousands around the world) report the same things - we do not die into nothing, we have a different journey after death and for a certain period of time we keep our identity and can see what is going on here on Earth with our loved ones. I know, it is not a consolation for you, but I am sure that if you keep your mind open to just "may be" that is true, you will be talking to your mom with much less pain...

Dorogoi moi maljchik, pustj Gospodj oblegchit tvoiu bolj and stradanie, pomni and liubi svoiu mamu takoi kakoi ona bila do bolezni, ne derzhi v serdce ee umiraiushii obraz, and prosto govori s nei, mozhet bitj ona slishit tebia. Krepko tebia obnimaiu.

Sorry, the last part is in Russian with English letters.
Vilca

[mymom]

I am so sorry. I am thinking of you and your family.

[ziggymonster]

Thanks for taking the time to share your story......it is heartbreaking. I am sorry for your loss and wish you some comfort in the coming days

[Kekeg]

I am sorry for your pain and loss. Prayers for peace for you and your family. As time passes the memory of the last few weeks decrease and other memories will come forward. Thank you for sharing. God bless.

[janklo]

I read your entire post. I am so sorry. I cannot believe the clinic took all that money from your parents! That's so wrong!

I just want to mention a book that really helped me after my daughter died.
http://www.After-Death.com/

We have received messages from our daughter in the form of pennies. Be on the lookout, I bet your mom is sending your family messages from heaven!

[Maia]

It makes me so upset to read about this clinic in Germany. It's not the first case I found related to it, on different boards, this past year. That they call 'immunotherapy' that, what they do (chemoembolization and Remobav), makes me angry beyond words.

I wish I could give you a hug over the web... your pain is so palpable. Don't blame yourself, your family or even your mom for this... she made her decision, she chose that treatment, she was back home with her family for her last days. You were together. All the moments you shared during your life are with you, are *you*, forever. Keep your diary, treasure the love, and live. Your mom wouldn't want nothing less for such loving son.
May you be free of suffering and the causes of suffering.

[jeanette57]

I believe we are spiritual beings living a physical life/body. When we die we go back to spirit. There is a book called "hire the heavens" and the follow is what I used to lock in my guardian angel to me.

Spirit to the right of me
spirit to the left of me
Sprit before me
spirit behind me
Spirit in front of me
spirit behind me,
Please let (Name) be my major guardian angel.

my guardian angel (Kevin) leaves me feathers in odd places when I am so scared. I fell protected and loved!

So mom will be with you in all major life events in spirit! You know you are loved and now help your dad! He is without a life partner. It hits hard about 6 weeks when all the friends and family leave you alone!

[pukalania]

so sorry you have to go through all of this and for your enormous loss..i'm beyond words to say how i wish things could be different...hope some peace come your way soon
hugs

[skypup]

Thank you for telling your story, it will very likely help someone else from going down the road your family has had to travel due to that clinic. Two others (the only two I know of who went there) got infections there. Both had port infections and maybe one had c. diff. As an incurable stage IV, I do understand your parents decision to try an alternate route, though. Just so sad they feed hope and gobble up bank accounts without giving quality care. It is especially disturbing that you were kept in the dark while she was sick.

I am so impressed by your active participation and the way you were there for your mom. She was very fortunate to have you and I am sure that mattered a great deal to her!

i wish you comfort and peace. I lost my mom to cancer, too, and I remember the point at which the smiles and good memories overrode the trauma of the cancer. May that time come soon for you.

Thank you again!

[Choijk]

I'm so sorry for your pain . Mothers are special and it sounds like your mother was absolutely special and did everything she could to hang on. May your heart stop bleeding and relish in the memories. I'm so sorry, sending you my deepest sympathies. June

[Lisahopes]

I am so sorry to read of your loss.

I also lost my mom a year ago, so I can identify with much of your frustration and pain.

My mother was unwilling and unable to accept that she was dying. She kept hoping, even trying Stivarga a month before she died.

I live in Germany and was never advised to make use of alternative therapies, such as those of Hallwag because as far as I know, there is no medical evidence that they work. I do understand though that they are legally permissible here at least, if useless. I have read that even Hallwag clinic itself suggests a success rate of 1 in 40; pretty crazy if you ask me. But I suppose a patient may be prepared to try anything to survive. I probably would too.

I hope that you can grieve and that you find peace.

[ams5796]

Thank you for sharing your story. I am truly sorry for your loss. I hope in the future you can come to terms with it. What an awful situation.


Ann