VAPID Lapid, Yo

[AGBF]

Happy Wedding Day, Mr. and Mrs.! I would have given you a real cake if I had had warning! This one represents the Spring, a great time to get married.

Hugs,
Deb

 

[TooPatient]

VL -- Beautiful rings! I am so glad to hear she is doing so well.

Sending you both big hugs and huge congratulations on your wedding day.

 

[junebug17]

Congratulations on your upcoming marriage VL! I'm very happy for you both, have a wonderful day. Love the rings!

 

[mary poppins]

Glad to hear your SO is making progress.

Congratulations on your wedding!

 

[minousbijoux]

This is why I love this community. VL, so grateful that your days have been so beautiful - you and "the missus" deserve many of them. Better than any bling ever. Thank you for sharing with us such a tender and intimate time in your life. And thank you PSers for making me so proud of us as a loving community! I can't think of anything to give you except blessings, wishes for continued day to day contentment, and prayers of hope.

 

[VRBeauty]

I'm very sorry to say that I came to this thread very late, and read about the surgery and the dark days immediately following it and felt that I had nothing to add that might be in any way helpful. But I kept reading, and came to some promising news, and then some good news, and then... rings! WEDDING RINGS!!! Hugs and balloons for your SO's recovery so far, and congratulations on your upcoming marriage!

ETA - I can't believe that your SO walked a mile home so shortly after major surgery. How wonderful that she's rebounding from the surgery so well!

 

[arkieb1]

Congrats!!!! I hope you both had a beautiful day!!!

 

[ringcat]

Congratulations! And lots of best wishes of every kind for you both!!

 

[caf]

VL - congrats on your wedding. Such exciting news.

I have a good friend who had a chondrosarcoma in her head (skull base) and had surgery using the Endoscopic Endonasal Approach. (like 10 hour surgery through nose and sinuses) her tumor was softball sized and wrapped around her 8th cranial nerve. She then had her lifetime maximum dose of proton therapy. I am sure you know this but she got some facial burns and ear burns from the proton therapy - had some creams, ointments that she had to use. And has lost some hearing as the beam went through her ear. I am confident your SO's radiologist will address this with her but just an FYI. SHe had the mask too. She is almost three years out and doing well. I know different tumors involved here but her vision had been affected and it is back to normal now. I will keep my fingers crossed for your SO. Take care.

 

[AGBF]

Any chance we can have hand shots of your wife's wedding ring?

Deb

 

[rainydaze]

Congratulations VL! I hope you had a lovely day, and wish you and your now-DW many, many more happy moments!

 

[Sunstorm]

It is one of the most beautiful things I have heard of VL that you two got married, this is true love and I mean it, very few are fortunate to experience mutual, true and this strong a love and we will all die one day but as you have said neither of you will die today. This will certainly be a very hard battle for you but never forget the happiness you have now and have had. Many never have it. I offer you my heartfelt congratulations and will continue reading about you two.

 

[VapidLapid]

How wonderful it is to come here and find lovely flowers, and cake, and beautiful sentiments. Thank you all.

Yesterday the stitches came out. Thursday we see the Radiologist again to make the mask and run a simulation. I will know more about what kind of radiation this will be then. Today the Dalton power recliner arrived from Room and Board. A friend took DW out to the garden at St Luke's so I could restructure the living room. It is now both more comfortable, and cheerful. And cleaner.

When DW was in the hospital, I needed to find some contact info for the evil (very) side of her family. There is a box that has been here since her father died about 5 years ago. Her father was victimized by her half sister, who was her mother's daughter prior to meeting father, and father adopted her. When he was 82 she ans her husband (an arrogant wanna be money manager) convinced him to sell his house in Pa. that he had lived in nearly all his life, and move in with them in Fla. so he sold his house and they said they would need to get a bigger house than the one they had to have room for him and they took $140,000 from him to put toward the new house in addition to what they got for their house which was sold. Then they charged him room and board! Then they tried to have him declared incompetent so they could steal all his money. They failed, he got away to his older brother's house in Hollywood fla, and eventually went back to Pa to an assisted living apartment. He cut the step daughter out of his will. when he passed she and her husband drove through a terrible storm from Fla to Pa for the funeral. When she found out that he left her nothing, she said that if she had known that before she wouldn't have come! Given what she had done I found it hard to believe that she hadn't a clue. Whatever. So this box of stuff was full of her father's memories, report cards, photos and stories of serving in WWII, newspaper clippings, report cards.....I didnt find anything that would help with my purpose. But I did find Their wedding announcement from the newspaper, the signed register of guests from their reception, and the bride and groom cake ornament from their wedding in 1947.

 

[AGBF]

Your wife's family history is very interesting, VL. I think I have followed it correctly. It would make her half-sister a bit older than I would have thought if I am following it correctly, though. If your wife's father served in World War II (being demobilized in 1946) and married your wife's mother in 1947, yet she had already given birth to a daughter (your wife's half-sister), your wife's half-sister had to be born prior to 1947.

Then your wife would have been born after her parents' marriage in 1947. Anytime after. Do you want me to track down the evil side of her family? I like a research challenge.

Deb

 

[momhappy]

Congrats, VL!!!!! I am SO happy to hear all of the exciting news (health-wise and marriage-wise). I wish you the very best

 

[VapidLapid]

Deb, your understanding of the people and times is spot on. I don't need you to hunt them down for me, I know right where they are.
There are also very excellent relatives from the father's side, and we are in touch with them and they know what is goign on.

So what is going on? I wonder myself frequently. Yesterday we saw the Radiologist. When we saw the neuro opthamologist monday she asked me what kind of radiation this treatment is going to be. I did not know what to say, I only could say it is 25 treatments over 5 weeks. Since I had to opportunity to ask the radiologist yesterday, I did. It is not gamma knife, not sterotactic, and not whole brain. It is Intensity Modulated Radio Therapy. Yesterday they made a thermoplastic mask molded to DW's head that will keep her perfectly still during the treatments. Next week they will do a PET scan. The treatment will not start until the 12th of the month. I have concerns about that, as today is nearly three weeks since surgery, and they did not get it all. It also appears to us that the swelling behind the eye is continuing to grow, That is the area where the parts of the mass that they could not get are located. So we suspect the cancer is continuing to grow while we wait for treatment. I called the oncologist this morning to discuss this.I let her know of the delay in commencing radiation, and pointed out that as of the moment there does not seem to be a treatment in play for the overall systemic cancer. As we understand from the pathology that the brain tumor is really a metastase to the skull, we conclude that the fulvestrant that she has been getting is no longer working. So I asked if there is a plan in development to treat the whole cancer. She said there is no chemo that can be administered while the radiation is going on., but that she would be ok with authorizing another round of fulvestrant if we wanted. I said why would we bother when we already know it is not working? Then she said we could try switching to exemestane. I said that we would defer to her judgement, whatever she thinks is best. Now the Radiologist is scheduling the PET scan. I told the Onco that I would schedule an appointment with her for the day after so we can discuss this with the results of that in hand. With all this time waiting for treatment to commence, anxiety is starting to rise. However, DW has gained 5 pounds since escaping the hospital.

 

[Sunstorm]

Hi VL,

Now I am concerned with you, why are they not starting the therapy until the 12th? Sometimes it makes me wonder why there are delays when it comes to such important and urgent matters but I am sure doctors know best. Is it because of the surgery that her body and the area has to rest? It must be so very hard to wait. Is she doing well? It sounds like she is definitely improving because she has gained weight. How is her general condition, is she feeling ok considering and are you able to enjoy life together some? I truly hope so. Once the radiation starts, will it start working right away in shrinking the tumor and stopping its growth? I know it is up to us, we are crossing all of our fingers and toes to make sure that this awful thing is stopped in its tracks. This is a very difficult situation for you and you must take care of yourself too, ensure that while you are taking care of your wife, you have some relaxation too to ensure a sound body and mind. I hope you have a nice weekend under the circumstances. I will be thinking of you both.

 

[iLander]

Hi VL

I forgot to say I love the ring! That's a beautiful stone, just gorgeous.

I love the cake topper, I think it's almost like a cosmic gift from her father, for it to appear at just the right time. I hope it has a place of honor in your home.

As for the relatives, it's a common story. I don't think my grandmother would have charged a pickup truck on her credit card if my father and uncle hadn't asked her to. I could go on I've already told DH that when there is only one of us left, to tell the kids that any money that is left is going to a charity, so they stop waiting for us to kick the bucket.

I remember being frustrated when my MIL was going through her battle with cancer. The doctors didn't seem to grasp the idea of hurry up. Do what you can, ask to be notified of cancellations so you can slot into the space. That seems to work pretty well. As for treating the whole cancer, do what you can to push on that.

It all sounds exhausting for you. Every now and then, give yourself permission to not think about it for a while. A little time off. Enjoy the great weather that's finally arrived. Your DW is SOOOOOOOO lucky to have an advocate like you.

Hugs for you both!

 

[canuk-gal]

HI:

VL-- Are you here? Can you come 'round?

Miss you!

cheers--Sharon

 

[minousbijoux]

It seems so petty in the midst of all that you are going through to ask you to update us. But if you happen by, and feel like it, we would love to know how you are and how DW is doing. At least know that there is a surge of positive energy, affection and just plain ol' good coming from PS to you.

 

[missy]

Hi Vapid! Just wanted to stop by and add my continued good wishes for you and your dw and let you know I am thinking of you both. Hoping all is well and that life is going as smoothly as it can be. Hugs and love and lots of PS healing dust being sent your way.

 

[VapidLapid]

Sorry to have kept you all waiting for some news; it just doesnt seem right to dump so much stress and suffering on PS.
As most of you know, after the surgery we had to wait a month for the site to heal before they could start radiation, Intensity modulated radio therapy. The week before Radiation began there was a new pet scan. that scan showed Aggressively advancing disease at every prior site . The three lumps in the left breast doubled in size in three months. It also showed new sites of metastatic disease, including a lymph node, a lung and a possible spot on the liver. also a questionable spot in left maxilla associated with a bad root canal.
Radiation began 6 weeks ago. With holidays and scheduling it took 5 weeks to do 20 treatments. that ended wednesday last week. In the mean time, DW has been complaining about a loose crown on a left molar that it making it hard for her to eat on the only side she can use. Having read the pet scan I did not believe the lose crown was the whole problem. I made an appointment to see the ojn surgeon for follow up on the surgery he had done a week before we went to the ER and found the cranial tumor. While we were there we asked about the loose crown. He put his finger in and said the crown is loose and that we could go to the regular dentist to have it re-cemented. So I pulled out the latest pet scan and asked him if he could help me understand the language characterizing that tooth and the associated bone. I dont have it in front of me but it showed huge increase (3x) in hypermetabolism, and described that as lytic lesion.He said that could just be infection. I asked him to do a complete examination of the tooth. He stuck a probe in and it went right through; there was no tooth material left in the upper gum. He made an Xray. The tooth root is rotted away and is a mass of broken shard-like remnants, and so it the maxilla at that site. He said the tooth had to come out and that he our regular dentist could do that, there might be some bone fragment that need to be cleaned out too, and he could do that. I said it would be much better for us if it all could be done in one procedure and that I would like him to do it and I also suspected the rotting maxilla could be both lytic lesion and onj. we scheduled that for friday. Thursday a bone fragment fell out of her gum after eating sushi. The next day we brought the fragment to him, and he took out the tooth, and the assorted bone fragments. Those have been sent to pathology.

The Radiation has improved the eye considerably. vision is still poor but the eye is back in its socket, and moves again.
The problem that gives me so much worry is that the existence of the skull tumor and the results of the pet scan tell us that she has completely failed on hormone and aromatase therapies, and had since before the trip to the ER. We were told that radiation could not start for a month after surgery, to give it a chance to heal. Then it was a month of radiation. We were expecting that after radiation she could begin chemo. We had been told that chemo and radiation could not be done together. But now that radiation is done we find that we have to wait a month or two for the radiation to clear before she can start chemo. This makes for a 4+ month period of aggressively advancing disease throughout her body, but only one small spot being treated. Everything else is still growing like mad. The pain from that is debilitating; a soundtrack recorded in hell.

Now today we have an appointment with the breast surgeon to try to get the lumpectomy that we were pursuing before all this started back on track. As the lumps have grown significantly they are more painful. That growth may also change the feasibility of of performing that surgery. Our next appointment with the Oncologist is still three weeks away. The second week in July our elevator is going out of service and will be so for 5 weeks while a new one is installed. We are on the fourth floor of a loft building; every flight is extra long because of our high ceilings. And it will be July and August in NYC, which can be brutal. I was going to rent a house on Shelter Island for the summer, but she freaked out on me. just trying to pack would cause her more anxiety than staying here, she said. Also I think she has fears about being more than 5 minutes away from her doctors. She has been on dexamethasone since the craniotomy and that is messing with her personality, though they have started to taper the dose of that down. For unknown, and surely unjustifiable reasons she has been refusing to increase the dose of her pain management. She is on the lowest dose (12 mcg) fentanyl patch. We have boxes of 25 mcgs as well as some 50s if need be, she just wont do it. I tell her there is no valor in needless suffering; meanwhile she whimpers and moans and screams and stomps her feet and kicks the doors...

I am having a hard time dealing with the stress. I have developed a twitch in my eyebrow. when I sleep it is full of nightmares. Rather than drown myself in wine and klonopin, I joined equinox this week, and had my first session yesterday. There is a pool in the basement so I am planning to swim three days a week.

I was glad to see that Apollo finally got home safe and sound.

Thank you all for your concern and good vibes!

 

[chrono]

VL,
My heart goes out to you with the ongoing stress and worry. Please don't forget to take care of yourself too.

 

[iLander]

Oh, vapid . . . so sorry to hear all this.

But they say that your greatest strength is also your greatest weakness. Her strength is that being tough has brought her this far, her weakness is that being strong is robbing her of relief.

I would trick her into using the higher dose patches. Switch out the packaging to make the higher dose look like the lower dose. Open up the pack and switch the peel away sticker or whatever. But that's me.

You're doing great, VL. Kudos and excellent job to you.

Dust for you both.

 

[minousbijoux]

Equinox sounds like a great idea - good for you. So does switching out the pain patches to have her at least try a higher dose. It might mean additional relief for you as well.

Yeah, the worst part of this all is what your mind can do - its like you are stuck in a nightmare 24/7. I am so sorry.

I'm not saying this is you, so take what you like and leave the rest. When things were really bad with me, I found a great support group. I resisted it for a while because it felt like another thing on the never-ending to do list. But it ended up being the best thing. Everything I said, was understood by those around me. People knew the doctors, strengths and weaknesses. People knew protocols and had anecdotal stories/info about what worked for them. It gave me a safe place where I could speak freely in the language of cancer. R, you can't carry this alone - nor should you.

 

[TooPatient]

I'm glad you came to update. Please don't feel bad about sharing here. Because you are sharing, not dumping.

So sorry to hear you have both been through more rough times. I had been hoping your silence meant you had relatively good times and were out enjoying each other in more pleasant settings.

Dang cancer. No one should ever have to suffer the way you two are.

I hope things start to turn around and she can at least be more comfortable. For your sake too. I know how hard it is to see your SO in bad pain.

Sending you both hugs and positive thoughts.

 

[iLander]

TAKING THE LIBERTY OF PASTING THIS HERE FROM ANOTHER THREAD

Post by VapidLapid » July 5th, 2015, 11:26 pm
I am not happy

Tears well up in my eyes and run down my face in the most inappropriate times. I never got over losing my alter ego, so I am ill-equipped for losing my best friend, though it is immanent.
I'm sorry, this is not what you started this thread for.
Don't mind me

 

[iLander]

Sorry to hear this VL.

I very often think of you and your lovely wife.

Dust and hugs to you both . . .

 

[Amber St. Clare]

sending out dust and hugs. Stay strong.

 

[TooPatient]

Oh, VL. I am so sorry.