Cancelling the wedding.

[GoodSoul]

I''m sorry to hear about your FFIL''s health issues.

It''s hard to say what to do as everyone and every family is different. I hope you don''t mind me sharing mine:

My FI and I talked about marriage for awhile... and before we got engaged, my FMIL was diagnosed with stage 3 cervical cancer. A month later, my dad was diagnosed with a damaged heart valve and 3 seriously blocked veins and required a heart surgery. With our own family health issues, he still went ahead with the proposal. We know that it''s important for our parents to see us settling down with a good husband/wife. We know for sure that the last thing they want is to be the "reason" for our wedding postponement. We announced to my immediate family and set the wedding date. Having said that, we both know that the priority is on their treatment plans than our wedding.

To us, the wedding is more for the parents than us as we''ll be happy with just go to city hall and sign the papers. We have 7 mths before our wedding and all we did was book the venue and the photographer. The wedding''s focus is on people.. about getting everyone together (like a reunion). The rest like flowers, decor and etc are not important to us. Seems like the pending wedding have a positive impact on both of them as they have something to look forward to.

I can definitely empathize on how your FI cannot fathom a wedding right now. I''m not sure how important the wedding is for both of you. It was easier for us ...as we view it differently, the wedding makes our parents happy and hence, it''s still a happy event. We are happy that we are starting our life together by doing something positive for our family.

Do not mind what people has to say about your final decision as those are not important at all. What''s important is what makes you guys happy and what''s most important to you guys in times like these.

My heart goes out to you and family during this stressful time.

 

[Linda74]

Our daughter was married on October 10th. My husband was diagnosed with stage four adenocarcinoma of the lungs,, with mets to the brain, spine, lymph nodes, ribs and adrenal glands 5 weeks before the wedding. This was a huge shock to all of us as we thought he was the picture of health. Since the wedding was so close, we decided that it must go on. Many people had purchased tickets to come, from across the country and some from Europe. My husband was adamant and his pain through all of it was that he had ruined his only daughter''s wedding. His cancer was and is very aggressive and our worry was whether he would be able to walk her down the aisle. He was so ill the day before, i decided he would not be able to do it. As it was, we did not attend the rehearsal dinner or stay overnight at the hotel where all of the guests were. But miraculously, he was able to walk her down the aisle and stay to witness the reception we had planned and paid for. Looking back, for us it was the right decision. My daughter radiated as she walked down the aisle grasping her father''s arm, and later dancing with him. I was glad that he could be there for this milestone. Personally, the wedding was a blur for me and certainly not what I had looked forward to.....the devastation robbed so much of the joy from us. They cancelled their honeymoon so that they could be near by since his health was so tenuous.
No doctor can guarantee what will be six months from now. Watching a family member slip away from this horrific disease certainly impacts the joy of impending marriage. Were our wedding not so close, I do believe it would have been cancelled. It was a bittersweet day and one that in spite of months of planning and a huge amount of money spent was quite ambushed by illness. I am sure you will ultimatley make the right decison for your situation. I just wanted to share from the perspective of a parent going through the same thing.

 

[icet]

Hi ally,

i usually just lurk but I read your story and feel your pain, my future father in law was diagnosed with AL stage 4 a month after DH and I got engaged, I was an intern at that time so planning a wedding seemed near impossible at that time. But we decided on having a small intimate wedding that took only a few of months to plan. We figured that we would plan for a family reception at a later date (we had booked a place for the next year already). We both have very large families and alot of them were pissed off at us/ thought I was preggers after we announced to everyone that we had a small family wedding, but we told them we wanted an intimate wedding (we didn''t tell extended family about FFIL''s illness). Well anyway, we had an amazing wedding and it was so meaningful and fun. Not to mention stress free because it was a party for 25. Anyway my FIL underwent chemotx and is in remission, (we''ve been married >3yrs now) and the venue that we had, we moved the date slightly to throw my FIL a huge birthday party with family all over instead. My parents and his mother were initially against a small wedding too but once it sunk in, it made a lot of sense and they came around.

I''m not sure where you are concerning residency/med school but if you tell your situation to the dean/program director, they will probably work with you. If you''re still a 4th med student, now''s the time b/c it''s harder during residency.

I hope this helps with ideas and i''m really sorry about your FFIL

 

[rainwood]

Ally -

I replied to your previous thread but you may not have seen it. My husband has had CLL for 11 years and is in treatment again. CLL is a chronic disease and is not typically an aggressive form of leukemia unless left untreated for many years as apparently your FFIL''s was. I find it hard to believe that they didn''t diagnose the CLL earlier. My husband''s was caught in a ROUTINE blood test in a pre-leukemic stage 14 years ago. He''s had a variety of treatments and that''s why he''s still alive today. Starting treatment earlier could well have made a difference, and might still.

I''d strongly encourage your fiance''s father to get a second opinion from a CLL specialist, not just a regular oncologist. Only they are qualified to say if your FFIL''s CLL is too far advanced for treatment. And keep in mind that CLL is the most common form of leukemia and is usually diagnosed in patients in their 60''s and 70''s so it''s not unusual for people of that age to be treated. My husband is an exception as he was diagnosed in his 40''s, but if it were my family, I''d definitely get a second opinion.

 

[allycat0303]

I wanted to address the medical questions first.

Rainwood, Jerseygirl:

I am a 4th year medical student. From the very first day, 2 years ago when he started to be investigated for the anemia, he gave me permission to look at all of his tests results and files because he didn't like the delay that it took to get answers. The hospital he is being followed at is Notre-Dame, in Quebec, it is the largest tertiary hospital in our province, with the most funding. It is a university hospital, and happens to be the one I do all of my rotations at. Honestly, 2 years ago, when he was referred to the oncologist with the anemia (and NORMAL WHITE blood cell count), I was certain is was a myeloid disorder. But he has had bone marrow biopsies every 6 months and they were NORMAL. He was then sent in endocrinology to see if a low testosterone could be the cause. While testosterone was low, it was not the cause. About 3 months ago, he had another routine biopsy which was also normal (I have verified those pathology reports myself). Anemia at around 110 red blood cells, and NORMAL white blood cells with normal.

Then 2 weeks ago (perhaps 3) he had a routine blood test for his family doctor. At this point it came back with an anemia at 85, and the white blood cells art 75 000. Which was insanely high. His family doctor told him to consult at the emergency room immediately. At that point, they redid the bone biopsy. However, without even having the results, they started him on hydrea (an antineoplastic agent). A week later he came back with severe dyspnea. They retook a blood test, and the red blood cell was down to 45, and the white blood cells at 90 000. A day later, the bone marrow biopsy came back with 100% hypercellularity (preliminary report). At that point the oncologist conferred with his collegues on the issue of chemo or not. At this time, they decided that given his age, and cardiac history, chemo was unadviseable.

At this hospital, there are at least 9 oncologist, 4 which are specialized in this field. I can not question whether the diagnosis is correct, or if it was timely made. Being on the other end of this, I know that biospies are not 100% falliable. And that it happens that it is normal. In addition, eventhough the disease is typically indolent, it I also know that *typical* means nothing. Cancer cells behave however they want, and can become more aggressive.Their conduct has been spot on. However, on the question of chemo, I don't know the actual specifics of how this is treated. If it is useful, or is it something that they try palliative and brings on more harm then good. I ALSO know, that although his oncologist did ask the other oncologists their opinon, I know that medicine is not black or white, and like it or not, the treating doctor has an *opinon* or a direction which he leans more toward, and I believe that that influances the treatment options.

I will broach the subject again with his parents. The other huge tertiary hospital in our province is the Montreal General/Royal Victoria, which are the university centers of McGill University. So there's a possibility there. Tomorrow I am going to speak to an oncologist because I want to know more about the treatment options. I don't have enough knowledge to know what's available, or possible in his case. Books can teach you things, but there are any nuances that if I haven't done a rotation in oncologie, is beyond my grasp.

I'll have more news on Tuesday.

 

[allycat0303]

It seems so foolish to talk about weddings after that. But, it is an issue.

I want everyone to know that we read everyone of your responses. I am sorry if I don''t write back individually because we are leaving to spend the day with his father. Both of us are overwhelmed by you genorosity of spirit to take the time to share your experiences. Linda74, Thank you especially for sharing your difficult experience with us. We really needed the persepective of someone who has been there.

Although this might seem totally selfish, this is the way we see it. For those who have known me on this board for a long time, you know what things have not worked in my favor as far as this wedding (deco, surfgirl....did I mention my sister already has a new man in her life???) Now we are both freaking out that he''ll pass away in the next 6 months, and we cancel our wedding. And let''s say he doesn''t???? Then we cancelled the wedding for nothing. Fast-forward to next year and he is ill/or not doing well (because you never know) do we cancel the wedding again? That doesn''t make sense to me. It''s impossible to predict, and we could end up putting it aside for YEARS.

So I know it sounds callous, crass, but we are leaning toward going on with the wedding. He wants to be there, and there is a chance he''ll be there. And if he is, his whole family will be there to celebrate with him, and see him. It might not be the best wedding, and it will be sad (of course), but we want to get married. It''s not the ideal situation, to get married when someone is dying, so we''ll be sad. His mom wants a wedding, and we want to be married. We have decided that if we do decide to go with this, we are getting married NO MATTER what. And that means even if I am wearing black as a gown. Because, this is long time past due. BUT we''ll talk about it today with his family.


Oobiecoo, IceT, KimberlyH, GoodSoul: Thank you for sharing your stories with us.

 

[galvana]

I do not have my own personal experience with this but wanted to offer my comments from what i have seen with friends.

I think you should DEFINITLY keep the wedding date as is. His parents are looking forward to the wedding.
Having the wedding in his father''s mind will help give him strength and something positive to focus on during this time.

I mean based on what you said -
a) His parents (before this happened) were very, very excited about the wedding. They were very thrilled to have all of their extended family at the wedding. This was something that was very important to both his mother and father. It seems to me, (because his mom specifically mentioned the wedding during the doctor''s appointment) that this continues to be something important to them regardless of his father''s illness.

right there she said it herself. This wedding is important to them. I honestly think if you cancel it, NO MATTER what reason you give, it will hurt the father/ stress him out/ make him feel responsible and stress is never good for the body.

The wedding planning is bringing them joy - keep it going.

 

[KimberlyH]

Date: 12/7/2008 8:43:49 AM
Author: allycat0303

So I know it sounds callous, crass, but we are leaning toward going on with the wedding. He wants to be there, and there is a chance he''ll be there. And if he is, his whole family will be there to celebrate with him, and see him. It might not be the best wedding, and it will be sad (of course), but we want to get married. It''s not the ideal situation, to get married when someone is dying, so we''ll be sad. His mom wants a wedding, and we want to be married. We have decided that if we do decide to go with this, we are getting married NO MATTER what. And that means even if I am wearing black as a gown. Because, this is long time past due. BUT we''ll talk about it today with his family.

Ally, it''s not callous and crass, it''s the life cycle doing what it does and we just have to go along for the ride, and continue to live our lives. I do hope they support your moving forward with plans, it''s been a long time coming and it''s time for the two of you to move forward as a married couple.

 

[rainwood]

Ally -

I knew you were a med student and think you can provide invaluable assistance to your FFIL and his family. I'm not a health care professional, but like most did a lot of research on CLL when my husband was diagnosed and continue to try and stay on top of current research. We've also met with two of the top researchers/CLL gurus in the U.S. - and I'd put no more than 10 doctors in the U.S. in that category. What the CLL specialists we've seen use to determine if treatment should start is the doubling time of the white cells. In December 2007, my husband's white count was normal. By January 2008, it was 10,000 so we started watching it closely. By the time he started treatment in August, it was 90,000 and even then the doctors said he could wait a little while longer. I know that 90,000 does seem insanely high, but it isn't unusual for CLL patients to have counts that are far higher. Some have started treatment at 200,000 to 300,000!

The treatment my husband is on is kind of the latest, currently favored treatment for CLL and is referred to as either RFC or FCR because the treatment combines Rituximab (a monoclonal antibody) and two chemo drugs, fludarabine and cyclophosphamide. The treatment is given for a maximum of 6 cycles with 3 to 4 weeks between cycles. RFC is not considered a cure, and it doesn't work for everyone, but the goal is to cause a molecular remission of the CLL. My husband's first RFC treatment caused him to go into remission for 3.5 years. I'm thankful for every day of that. So far, his response to this cycle has been great and we are hoping for another multi-year remission.

RFC is no day at the beach. It's chemo and he has experienced all the nasty side effects of chemo. It's also insanely expensive. But the alternative was to do nothing, and let the CLL run its course. We chose not to do that. When he falls out of remission this time, we'll consider a stem-cell transplant (with adult stem cells) which does have the potential to cure his CLL or we'll do whatever promising treatment that is developed between then and now. That's the right path for us. Whether that's the right path for your FIL's, I can't say. But a 90,000 white count for us was the trigger to get treatment, not a sign that the CLL was too advanced to treat. Your FFIL may have other issues that affect his suitability for treatment (I can't speak to the cardiac issues), but the high white count by itself isn't necessarily one of them.

Best of luck to your FFIL. If there's anything else I can tell you about our experience with CLL or my husband's treatment, I'm happy to be of help. I know how devastating it is to get a diagnosis like that.

ETA the correct spelling of cyclophosphamide - why can't all these drug names have fewer syllables!

 

[allycat0303]

Rainwood,

I think the problem is that we live in Canada. The health care system in Canada, is not like in the US. We have health insurance for everyone, but it does not include consults with US doctors. We are also limited to the medication and options which are approved for by the Quebec government. Although his parents are well off, I don''t see them being people that would be able to afford this kind of treatment.

Incidentally, I went in to the hospital today to check the pathology report. The diagnosis has been amended to Chronic Myelogenous Leukemia (I don''t even know why the diagnosis has been amended.) Hemlatological disorders are a total blank to me.

I have a feeling that their resons not to treat with chemo are based on a variety of reasons, including the cardiac issue (I didn''t feel that it was sufficient because he has had bypass surgery.) However, I think it might have to do with 100% hypercellularity of the bone marrow, severe anemia, his age (72), elevated creatine level (the bypass was pretty inflammatory on his kidneys). I know that the WBC level is not the reason they decided to treat with more then Hydrea. I was commenting on the fact that you said it was "unlikely that he had chronic leukemia for a long time with no diagnosis" I was explaining the chronology to you so you understood why it is new to us. The presentation of his disease was not typical, nor from the pathology report, seems they have changed the inital diagnosis from CLL to CML. But I know that you CAN NOT make a diagnosis on a blood test alone. The bone biopsy is the definitive diagnosis.

I also get the feeling that he''s an iffy case, because the oncologist discussed with more then 1 of his collegues. I don''t know why they didn''t offer transplant as an option. Notre Dame, is a transplant center, so it can be done. I don''t feel like I can (or even should) make suggestions on their treatment, because there are nuances to be grasped in this. There are reasons they made the decisions they did, that I obviously can''t comment on, they''ve done 6 years residency and a fellowship on this.

I would like to understand why though, because it would be clearer to me.

GINGERBCOOKIE!! IF YOU HAPPEN TO BE LURKING AROUND, I WOULD LOVE IF YOU COULD COMMENT!! It would save me the trouble of hasseling the heme-onc on Tueday.

 

[rainwood]

Ally -

I hear you about the Canadian health system. My sister lives in Canada and her daughter has a number of immune system issues. It''s wonderful that health care is available to everyone at no additional cost, but there are trade-offs too and they can be frustrating.

The change in diagnosis from CLL to CML is something I can''t speak to. I have read that the boundaries between CLL and other hematological disorders like lymphoma can be blurry and some think they aren''t different diseases but rather just variations along the spectrum. The only thing I know about CML is that unlike CLL there is a drug called Gleevec that some CML patients can take that manages the disease.

My guess is that your FFIL is not a good transplant candidate because of his age and heart disease. That''s what our oncologist who is a transplant specialist refers to as co-morbidities.

I''m sure that whatever assistance you feel comfortable providing will be a help to your fiance''s family as they deal with the medical prognosis. And for what it''s worth, I too think you should go ahead with the wedding.

 

[oobiecoo]

Ok... please forgive me if I''m out of line here. But you said you are limited in medications and options in Canada because the government provides it... is it possible that your ffil not being treated with chemo or having a transplant has something to do with the government not wanting to *bother* with him?

My FIL is a heme-onc but doesn''t really like giving any real sort of advice without knowing the patient. If you get desperate for any suggestions or knowledge though then I could probably ask him for you.

 

[Linda74]

Ally, I am so sorry you have to deal with this. No one expected my 62 year old athletic health nut of a guy to be so sick .....but I want you to know that being at the wedding and seeing all of the family and friends did everyone good. I had so many notes from people about how special the wedding was and how much the family commitment demonstrated what love is all about. I think moving forward with your wedding is absolutely the right decison. As a parent, you never want to feel like you are burdening your child. My prayers are with you.

 

[allycat0303]

Oobiecoo,

Thank you for the offer! They have an appointment on Friday. I will be at the hospital that date, so I am going to try and go with them. I will ask him myself, but if I don''t get the answers, I probably (if you don''t mind) would want general indications/contraindications (not about my FIL specifically).

As for chemo and transplant, I didn''t mean to make it sound like the Canadian government doesn''t bother. The transplant is not done because of his age, that at that point, the risk/benefit, and chances of him surviving the treatment is deemed to low. As for chemo, it is the patients choice, it was just that his oncologist said he didn''t recommend it (although he didn''t really explain the reasons, but it is always the patients choice.

rainwood:

I have heard of gleevec, and am doing a little research on it. Unfortunately, it''s a medicine of *exception* in Quebec. However, I need to go back to the hospital to determine if he is in the blastic phase. I am crossing fingers and toes that we aren''t there yet. If he isn''t, then the question is if the oncologist plans to introduce this medication following hydrea, or if it is not suitable for him. I did an exhaustive search on clinical trials with Gleevec, although it''s so frustrating because when I talked to his parents today, they were REALLY resistant to getting a second opinion. And to trying a clinical trial. I am starting to feel maybe they need another oncologist.

Linda,

We did talk about canceling the wedding tonight, it didn''t seem that anyone was really sure if we should of not (the whole family was there) they thought it would be discouraging to cancel, but (understandably, they are dealing with day-to-day at this moment.) Hopefully, on Friday I can go to the appointment and figure out the oncologist''s plan, then we can decide what we''re doing.

I am in a total limbo about everything, and I hate it.

 

[vintagelover229]

HUGS AGAIN**** I''ll keep you in my thoughts this week darlin. I can''t imagine the stress you have right now!

HUGS

 

[LauraBabe08]

I am so sorry to hear about your situation, and it reminds me of my situation right now with my grandfather.

In Aug (the same day that I bought my wedding gown) we found out that my grandfather has glioblastoma (very aggressive brain tumor).

Its really important for me to have him at my wedding, and I considered moving the wedding to a sooner date. In the end, we decided to keep it when it is (my grandfather is doing surprisingly well, but hes definitely not the same). I know that he would want me to keep it how it is, and if he can be there I will be thrilled, and if hes not, then I know he will be watching from heaven.

My grandmother is the primary caregiver of my grandfather right now, with the help of hospice nurses, and my mom, aunt, and uncle. I think its especially a difficult time for my mom b/c she is very consumed with my grandfather. She is still managing to help me a lot too, but I know that its difficult for her.

 

[SarahLovesJS]

Just wanted to send thoughts and prayers your way allycat. And ((hugs))...

 

[cbs102]

Ally,
I am so sorry that you and your FI are finding yourselves in this situation. it is absolutly heartbreaking. Two years ago, my uncle was diagnosed with lung cancer that had spread to the bones and the blood. We knew that he had at the most 6 months to live. everyone was devestated. My cousin (his son) was in the process of planning his wedding and had asked him a month before the diagnoses if he would stand up as the best man. my uncle of course said yes not knowing his fate so to speak.

My uncle and aunt lived in florida and cousin was living in philly. the wedding planning went on and got more extavagant by the day..all the while my uncle was fading very very quickly. my cousin never once went to visit..because he was too bus planning the wedding. my uncle ended up dying at the end of july... two weeks before the wedding. they carried on with the wedding and EVERYONE was motified. i had a very hard time going to a special occasion and celebrating this couple when my uncle had just died. we all thought that it would be better that the family was together..it didn''t end up that way at all... i felt guilty and awful the entire time. our dinner conversation was about how we felt that the couple were selfish.. that the best thing for them to do was have a civil ceremony with my uncle standing up for them..but the wife ''needed'' to have her dream wedding.

i probably seem really angry and bitter about this whole topic. yes, every girl deserves her dream wedding...but they knew my uncle had 6 months or less to live. they carried on like it didn''t matter. maybe you could get the family for a reunion of sorts. this would be great so that people can come and say their goodbyes and get closure ...and possibly have a civil ceremony so that he can be there and then have the big wedding down the road. this is a tough thing though..and i wish you both peace in this process...i know how heartwrenching it is.

 

[octbride2be]

Hi Ally
- I am Linda74''s daughter- my mother told me about your post yesterday and I wanted to respond to you since I know exactly what you are going through.We found out my father had Stage IV cancer on Labor Day weekend and I was getting married on October 10th. It was such a hard decision and were it not for my parents, I might have gone ahead and cancelled it. At that point, planning and thinking about the wedding was just too much to worry about. I will say that I am so happy we went on with the wedding. Up until the moment of the wedding I was not sure if my father was going to be able to even make it to the wedding. He and my mother both insisted that we did not cancel it - In the end, my dad was able to walk me down the aisle and even dance with me...it was an incredible day because he was able to make it and made everything that much more special. I know that there is a great deal of uncertainty if your Fiance''s father will live to see the wedding- I will say that a big event like a wedding and something for patients to look forward to often is what will keep them hanging on and fighting. I truly believe that and I think the wedding is something you should go on with regardless. First, it gives your family something to look forward to ---and it is so important to have that - even through these very tough times. Bringing family together does give everyone such a special feeling and does wonders for the soul. Secondly - it will give you and your fiance something to look forward to as well as your families-

You WILL find that all of the "little" questions on the wedding boards might bother you and the rants people go on about "their veil not being perfect" or what type of linens they should pick for the table will REALLY annoy you. I remember reading some of the posts from people on Pricescope and TheKnot and thinking "I wish THAT was my problem" and almost wanting to write back to them to just get over it because they had no idea what my family was going through! That is just a natural part of dealing with a sick family member and the devastation that comes along with it- Your life does a complete 180 and you need to really rely on family to get through it. SO- you might not stress about all of the little details of the wedding (I stopped once my dad got sick) but it sure did put things in perspective and teach me to laugh if things were not perfect! In the end I think it is important to remember what the day is all about - joining you and your fiance in marriage and your two families together.

I pray that your fiance''s father will be able to make it - but if he should pass before that time, it will also give your family a reason to celebrate life again. I think that going through a tough time like this also makes the bond with your fiance much stronger and really proves your commitment to each other --- I know it did for us--- and even though it has been so very hard for us to go through this, it has made our relationship much stronger. Give it some more time before you make your decision- the first few days of diagnosis are so horribly heartbreaking and sad that you can''t think clearly --it doesn''t get much better but it does become more of a normal part of your life. MYself and my family are still in shock and it''s been about three months- cancer is such a tough thing to see someone that you love go through. Big prayers and hugs to all of you and I wish you all the best going forward with whatever decision you make.

 

[allycat0303]

I am FREAKING OUT. I have exams to study for and I can''t study. I''ve spent the whole night reasearching CML, and have been unable to find a reason why he wasn''t put on GLEEVEC. In the official guidelines Canadian consensus groups of management of CML, GLEEVEC is indicated in all phases of CML. I have found no contra-indications that would eliminate him. In addition, I looked up the doctors name in Notre-Dame hospital, and their doctor is NOT listed. If FIL was seen by a resident, or a fellow without the supervising staff, I am going to supremely angry!!!! Gleevec is a medication of exception in Quebec, but this wasn''t even mentioned in their direction (they can afford to pay it and might have medical insurance that covers it). Hydrea (the drug they were put on) does not prolong life. In addition, last night, MIL told me that the doctor initially perscribed a dose that was much too high and said "he tried to call them...no record on call display" to tell them. In addition, they told me something about the doctor leaving for a long time (...we usually do that when we confer with the attending doctor...BUT USUALLY the staff comes back with the patient). And they mentioned the doctor was YOUNG. In addition, the doctor said things which strike me as odd i.e he talked about chemo, but didn''t tell them the % chance of success, or the % chance of complications. He gave them 10 minutes the decide saying that "he would probably be worst off then he was now due to a stroke."

ARGHHHH!! How am I going to wait until their appointment on friday to clarify this situation? Something about this whole thing seems off to me. He initally perscribed the wrong dose???? Ok then says he called, but no record. I am not saying that residents or fellows are bad. But I''ve seen fellows come from other countries where the medical system is not on par, and make really ridiculous decisions. (Trust me, a fellow once told a lady that her 20 week premature baby would be fine with a little oxygen).

 

[allycat0303]

cbs102: I understand your feelings. I feel like that in many ways too, which is why I haven''t made up my mind yet. I really want him to be a priority and not feel like he is getting lost in the process. I will not be having a civil ceremony.l. For one thing, this isn''t what the parents want AT ALL. Last year when we talked about eloping, his parents (who could easily afford it) said they wouldn''t be attending because that wasn''t a real wedding. His mother and father, have a very defined vision of the way things are done, and getting married in a civil ceremony is NOT one of them. They are very, very, very catholic, which is one of the reasons I chose to get married in a catholic church (I am Mormon) to please them. She wants an organ, a chorus, a mass, the whole bit. All of which I agreed to (eventhough I can''t take communion) to make them happy.

So it really will be wedding, or none at all. I already asked them about an earlier wedding and they have told me there is no point, and that was re-said yesturday night. Honestly, if his father does pass away, people may think we are completely selfish for proceeding, but we don''t believe in our hearts *that we are being selfish* for many reasons. First of all, because this CML, is unpredictable. And a part of me is not intrested in playing it''s game of trying to out guess it''s behavior. If his father does not pass away this year, or the next (because some diagnosis have said 6 months, and they honestly live 4 years) I am not going to wait each year wondering if this will be the year. It is not like lung cancer, where there are no if-and or buts about the time frame.

In addition a) his mom and dad will never agree to elopement, civil ceremony b) my parents will never be on board with elopement/civil c) my fiance and I aren''t too keen on it either. And his parents really want this wedding the immediate family thought it would give him a reason to go on, because he really loves us both and wants to be there. I have done a lot to try and make everyone in everybody''s family happy, and each time, it''s come back and bitten me in the rear. Maybe people will think we are being selfish, but it''s only family and friends there, so I think these people will understand why we proceeded as we did.

And I think writing this, I have made my decision.

octbride2be: thank you for taking the time to write. I am so pleased for you that you were able to enjoy that special moment with your father. I do agree that I am not stressing about the little details. There''s so many things that were making me crazy last week (what residency program will I get into??) that right now, I don''t care about. I mean really, WHO CARES? I just want FIL to be there when the responses come out.

LauraBabe08 : I am so sorry to hear that. I hope that your grandfather will hang in there long enough to see you get married.

Redrose, Sarah, Thanks for thinking of me.

 

[cbs102]

ally,
i am glad that you are able to come to a decision... i shared my story not to sway you in one direction ..just to make you think. my cousin and his wife WERE being selfish. the night my uncle slipped in a coma my cousin called my aunt and asked her for more money for the rehearsal dinner!! SO SELFISH. we thought that a civil ceremony or something along those lines for them because he made it SO important that my uncle be there (ie) bestman..

i am glad that you have made a decision and again, i wish you nothing but peace in this entire process. you are obviously really torn about the whole thing...very UNLIKE my selfish cousin!!

 

[pjean]

Date: 12/7/2008 8:43:49 AM
Author: allycat0303

So I know it sounds callous, crass, but we are leaning toward going on with the wedding. He wants to be there, and there is a chance he''ll be there. And if he is, his whole family will be there to celebrate with him, and see him. It might not be the best wedding, and it will be sad (of course), but we want to get married. It''s not the ideal situation, to get married when someone is dying, so we''ll be sad. His mom wants a wedding, and we want to be married. We have decided that if we do decide to go with this, we are getting married NO MATTER what. And that means even if I am wearing black as a gown. Because, this is long time past due. BUT we''ll talk about it today with his family.

That doesn''t sound callous or crass to me. That sounds like an acknowledgment that you and your FI have an important bond that needs to be cemented and celebrated. It also sounds like an acceptance that you can''t portion out your life for happy things and sad things - they tend to come all mixed up, whenever they want, whether you''re ready or not.

I know it''s going to be tough, and we''ll all be as much cyber support as we can be. But I hope his family is ok with this decision, because it sounds like a good one to me.

 

[vespergirl]

I''m so sorry for what you, your FI, and your FI''s family are going through right now. This is a toughie. Is there any way that you could get married sooner, at a different venue? Or maybe simplify the wedding to do something that would be easy to plan more quickly and still have some of the extended family there, so that your future FIL could attend?

The reason I''m wondering if it might be better to have a more simple wedding sooner is because I''m sure his father would love to be there, and also, you may want to postpone the wedding for some time after he passes. I know that it our culture (we''re from Eastern Europe) there aren''t supposed to be any formal celebrations (large wedding, anniversary or birthday parties) for a formal one-year mourning period after the death of a close family member. I know that this tradition varies from place to place, and is totally different in different cultures, but I just thought that an appropriate "mourning period" may be something to consider, depending on your FI''s and his mother''s wishes.

It sounds like you all are going through such a difficult time right now - you are in my thoughts.

 

[rainwood]

Ally -

One of the things we''ve learned through my husband''s CLL is that you have to stay alert to every aspect of treatment, ask questions, and keep asking until the answers make sense. Medical personnel are human and they make mistakes too, plus they''re in a hurry and often don''t remember the details of the patient''s case. That''s just the reality these days. Plus, some doctors and staff aren''t the greatest communicators. And if an intern or resident is the only one responsible for your FFIL''s care, I''d be looking to find someone who is an expert in CML - first, to doublecheck the diagnosis and then to be able to advise your fiance''s parents about the options. I wouldn''t stop pursuing this until I got the best heme-onc available.

One thing I have noticed in watching the other cancer patients when we''re at the treatment facility is that older patients tend to be more trusting. They rarely challenge or even ask questions about their diagnosis or treatment options. There''s a fine line between being an active participant in your own care and being a pain in the ass, but there have been several times when being a well-informed patient and spouse has caused something to happen or change in my husband''s treatment that needed to be done. And this is true even though we''re at one of the best facilities in the world with experts in my husband''s form of leukemia.

That''s why you are in a unique position to help. You have more knowledge to start with and can use the same terminology. And find out who he should be seeing. If the family dynamics make it difficult for you to be the advocate, then you can tell your fiance what you''ve learned and see if he can talk it through with his parents and intervene with the medical staff. And if it helps your FFIL''s to be more comfortable, Gleevec is not some crazy newfangled drug. A former colleague of mine has been on Gleevec for years and leads a totally normal life. And getting it in a clinical trial usually means you get the drug free (at least in the U.S.) We''ve often wished there was that kind of option for CLL.

Hang in there, Ally. And remember that going through this experience from the patient side will make you an even better physician. Best of luck.

 

[allycat0303]

Rainwood:

I spent the whole day doing research on the CML. And it just got me really down. Most studies indicate that Gleevec in the blastic crisis will not change the prognosis. There is a difference of perhaps one month in survival time. As for the chemo, it''s bleak too. It seems the mortality rate of the chemo is 20%, and even if you achieve remission, median survival is 2 months more. I can see why the doctor recommended against it. At the moment, at least he is healthy and completely asymptomatic. Going through chemo and (hopefully surviving won''t do much.)

It''s funny because this morning, I was really hopeful, and tonight, I realize that there really is NOTHING to be done except to diminish white blood cell count, prevent lecuostasis and hope for the best. And I also understand why the doctor started counting months to our wedding, because all indications are that he won''t make it to the wedding based on the survival times I saw once a patient is blastic crisis.

I was eating dinner with my fiance and started coming up with wild scenarios where the pathologist mixed up the samples, and it''s a mistake.

And that''s when I realized I was in complete denial of where this is going.

 

[rainwood]

Ally -

I''m so sorry to hear about your FFIL''s prognosis. You did exactly the right thing in using your knowledge to see if there were any other options. Sometimes there aren''t. That''s hard to accept, particularly for someone in the medical profession, but it''s better to have done the research and seen it for yourself than to always wonder if something more could have been done.

 

[FrekeChild]

(((((((((((((((((((((((BIG HUGS))))))))))))))))))))))))
For you and FI.

It seems as though you''ve come to your decision and I personally think it''s the right one.

You know, I had mentioned that FF had bought stones for an ering for me to my mom, and from there I sent her pictures of dresses than I liked, and she wrote back which ones she liked (Badgley Mischka). I told her about how I wanted to have a wedding in Las Vegas and all of the details I had thought about up to that point. And I told her that FF and I were going to go look at wedding venues while we were in Vegas. Every second of those conversations is precious to me now, because that''s all I ever get to have of planning a wedding with her.

When she was introducing FF to a nurse, she started to slip and say "This is my son-in-...my daughter''s boyfriend."

So I''m glad I shared that with her. She really treated him like he was part of the family.

I imagine if FF proposed to me in Vegas (Dec 17-20) there would be a couple of whispers of how selfish it was and blah blah blah. But I don''t think that she would have wanted him to keep waiting. She would have wanted our lives to continue. You know?

This is going to be hard. I hope that he stays as healthy as he is now for a while yet. Cancer is probably the worst thing I have seen, and probably the worst thing I''ll see for a good long time. Every moment is precious, and at the end you''ll both wish you had more.

 

[Bia]

I'm really sorry allycat...

It seems lately amidst the Holidays and all the wonderful news on PS, there are also quite a few PSers dealing with some really heavy stuff.

Can I just say: I think your relationship is really beautiful. You and FI trusted eachother to make the right decision, and you did. You are his strongest support system and he, and his family, are very lucky to have you. I'll keep you guys in my thoughts...I really do hope that your FFIL will get to be there and will be well enough to celebrate with his children and family.

 

[Bliss]

Ally, my prayers are with you and your family. Big hugs.