One patient with glioblastoma still alive nine years later
by KMart1951 on Thu Nov 29, 2012 07:04 PM
Hi everybody! I am writing as a family member of a cancer patient. I would like to see if anyone has any interest in advising me, or communicating woith me about my current issue, as I am an "outsider" in terms of knowing how one feels as a cancer patient. I am a person who cares about a cancer patient. I was a trauma nurse for almost 2 decades earlier in my life, and always felt that I was a helpful and caring person, especially when it came to family. In truth, everyone always does still come to me for advice whenever anything goes wrong with anyone in their fmily - or with themselves - healthwise. Even my sister in law - the patient here and problem for me now - came to me initially in her process. As my husband and I have been married for 38 years, and she has been married to her husband for 40 years, we have all - both sides - always gotten along well. While she and I never became really close, nor were we ever as clsoe to his side of the family as we were to mine, everything was always cordial and fun. We all got together for holidays, etc., over the yars, especially when both of our children were growing up, and we never had any major issues within the fmaily over all these years. My mother in law, and the parent of the person I am writing about, is still going strong at 98+, living on her own in her own home and while she does have some health issues, and is frail, she is far from needing to be cared for and takes very good care of herself. She doesn't drive - and that is only within the last two or so years - and she lives near her daughter, who is the cancer patient I am writing about. Our children see each other at family gatherings, but never were "close" either, mostly due to the fact that my sister in law and her family not only always lived a couple of hours drive away, so we always saw each other for the big occasions and holidays, but also because there is a 7 year age difference between her oldest and my oldest. Regardless, all in all, we were members of a very large extended family and things were always pleasant and cordial. Now, with the recent events concerning her health, things have changed dramatically and I would love some feedback from anyone here who is willing to discuss with me frankly how best I can be a positive presence in my sister in laws life. As I mentioned before, while we have never been close, now we are actually at odds, which I am baffled by and am looking for help understanding how to handle this. No matter what I say, or how I say it, it is the wrong thing! The situation has escalated to the place we are now, and the only way to describe this is as a stand-off! I am amazed, shocked and mostly saddened by this, and have turned to a community of people who are in similar situations for help in understanding, maybe, why this would happen, and more importantly, how I can best handle it for everyone's sake. Especially considering the fact that my mother in law is also facing having to deal with this disease with her only daughter, and she is 98 years old! I want to be sensitive to the matter and be an assett - no matter how that has to be accomplished - as I am completely baffled by the fact that it seems no matter what I say or do, it is misconstrued or causes some problem. As I have been a member of this family for almost 40 years, I have never experienced anything like it. My mother in law has no clue, but eventually she will pick up on the conflict and so to prevent any more pain, I would like frank comments and honest feedback as to what might be going on here and why. What have I done wrong (my friend has suggested that I do not have cancer, even though I do have a serious and disabling form of arthritis, and that is enough for her to be furious because she does have this awful disease)? I am willing to write this all out because I am hopeful someone may have some suggestions for me to make some move that will start us om a path to make this better. It seems a bit surreal, and I try to be the best person I can be when I am around this person in the family, but no matter what I say or do, it seems to cause some kind of unintended result - and I am baffled! So, if anyone has any suggestions to offer, I am wide open for any interprettion of the matter and suggestions to make it better. To give background on the matter, I have a family member (my husband of 38 years only sibling and sister) who was diagnosed with ovarian cancer, stage IV with mets. She has 1 tumor in her lung and on diagnosis had 25+ "hot spots" in her abdomen. Her diagnosis came out of the blue in February (2012). As if that were not enough to handle, she had also been previously diagnosed 2 (maybe 3) years earlier with a systemic autoimmune illness, and had been undergoing treatment for this since diagnosis. Prior to her oc dx she had responded well to her rx for the autoimmune, was able to travel and vacation internationally relatively comfortably. She had jut recently retired and was enjoying her time with her family and grand daughters. As a background medical note, she also had a hysterectomy at age 39 with removal of all but a small amount of her one ovary for fibroids and because she was finished child bearing but still young, the surgeon left a small piece of the ovary to prevent a traumatic, abrupt menopause at age 39 and keep estrogen in her system for heart and bone health). This remaining small piece was the part that went "bad". Due to the underlying autoimmune illness, she was also unable to have the radiation portion of the standard treatment for OC, and was limited to chemo only. Also, while she is undergoing treatment for the OC she is required to stop all treatment of the autoimmune disease, which is systemic scleroderma. In and of itself, this is a pretty terrible disease, and I do not believe that she will ever be able to resume the treatment for this illness. She underwent the first chemo for the OC (the initial diagnostic biopsy revealed that her particular form of OC was a type where there was minimal to no epitheal layer to the malignant cells, meaning (as I understand this) that this is a very aggressive, rapidly advancing type of OC but also, as an upside to the isse, because the malignancy has the rapidly growing cellular structure with no protective outer layer, this meant it would also suck up the chemo aggressively (like food) and was highly succeptible to being killed off by the chemo because of this feature of these particilar type of rapid growing cells. The very aspect of the cells that made this so scary, the rapid growth and aggressive spreading, was the same factor that also made it most susceptible to the chemo (at least, that was my understanding) and as such, this increased her chances for a positive response to the chemo. She had 3 courses of chemo, then had a PET scan which showed the best news possible in regard to her specific type of cancer's response to the chemo. The density of the tumors was diminished, the size of the main tumor was reduced and the "hot spots" appeared to have been killed off. At this time she underwent the debulking and tumor removal surgery, which resulted in even more good news. The tumor was a self contained entity, described to us as being a sack-like structure filled with fluid and it did not rupture upon removal. The biopsies taken at the time of surgery of the tissues around the surgical area showed no spread of the disease. There was one area/spot of "adhesion" to the nearby tissue near/of the bowel in the area near the ureter (she'd already had a stent placed in this ureter to prevent it from being pressed upon and possibly being closed off by the pressure of the rapidly growing tumor, greatly reducing her risk of consequential kidney damage, etc.) so the surgery results were even better than anyone dared to hope! This also confirmed that there there was no spread at that time to the major organs nearby, and the biopsies showed no existing "live" tumor near the borders of the places with clear margins. She continued to have the chemo (I think it was a 6 maybe 8 rx course), and had one complication with the surgical incision where one small area at the bottom of theincision refused to completely heal. This complication caused her physical pain, and also required a visiting nurse to come out to the house daily to change out her dressings, etc. She is a very private person and this was one thing she did not like, but she is the best patient because she listens and does exactly as she is told. In the meantime, long before the surprise of this diagnosis, she had made plans to attend her youngest daughter's wedding in another country. In spite of the issue with the incision, she felt well enough by the time of the wedding to be able to go, with her doctor's approval, and she thoroughly enjoyed the trip. This did take a lot out of her physically, however, but I do not think she would have missed it under any circumstances. When she returned she was tired, but ready to continue her treatments and she did. She had some issues that were not horrible, but when she had the last chemo of the series, and then the PET scan to see what the outcome of her full treatment had been, she expected that she would possibly need more treatment (I am guessing this was an instinctive feeling), but her husband was certain that the visit would result in them hearing she was in remission. During a discussion we had long ago, back when this was first discovered, she told me that after all the acute treatments were completed, the chemo, the surgery and whatever else, once that was completed that one goes on with life. You follow up with your primary doctor periodically, but basically it is put behind you, so to speak, and that is the end of it (unless it recurrs). If the treatment plan is completed and the outcome does not show a remission, that is another story - and that, unfortunately, is her story. It is also the point in time when she really started to change her behavior towards me. After all of her positive responses to her treatments, her surgery and everything else - she even tolerated her chemo fairly well, and after the nadir wouold go about her usual business - going out for dinner, seeing friends and family, etc. we would talk and text about things, and all seemed well. She was given a wonderful wig at the start of the process, and when she lost her hair and began to wear it as her hair fell out, when she felt good she looked great! In the photos from the wedding in July, she looked happy and (albiet thin) quite beautiful! Anyway, back to reality, the visit at the end of the chemo was not good, apparently, and the information she received was worse than anyone imagined it could be - especially in the face of her amazing positive response to everything from the very start. Rather than being in remission, or needing a couple more rounds of chemo, she had actually grown 2 new lung tumors and a new tumor in her belly. This had to have occured within the preceeding 2 to 3 months, and she was devastated. When she was able to think and function after taking in this awful news, she got a couple of second opinions, and then decided to stay where she was and begin a trial of Gemzar (?sp) chemo. Since she started this, and it has been about 2+ months, she has only been able to have 1 treatment, as her blood and chemical counts are too low, etc. and she told my husband yesterday that yet another tumor has appeared in her lung since the first 2 were discovered. All of this is background for my question - at this point she has pulled away from me competely - everything I say or do, no matter what the subject matter or topic, is met with resistance or worse. She and I were never close, but now she is not holding back her desire to not be around me or even talk to me. I have had a chronic arthritis/pain situation which I have been dealing with for numerous years now,and had to have numerous major surgeries on my left arm, not once during which did she even send a card, etc., and I have since 2007 had to go on SSDI, changing our lives - and lifestyle - forever. During those dark years in my life, she was never really interested in what was happening with me, us, and except for the occasional querry as to how I was doing, she was out and about with her life. Now it almost seems to me that she is angry with me because I am not as sick as she is? Or unable to accept any of my offers to talk or to help in any way possible. Because of her recent anger towards me - and my husband agree that this is all out of the blue and unwarranted - everything I say is cause for drama. So much so that I have stopped saying anything, We live far enough apart that this is not difficult, but I do feel very badly about all of this. I also would like to see my mother in law, etc., but cannot do so without having to see her as well. As I said, we live almost 2 hours away, and she and my mother in law live 2 blocks apart, so whenever we visit, everyone gets together for a meal, some chat to catch up, etc. There would be no way for me tovisit mom without her knowing and coming by, which would be ackward and unpleasant, and I would not want to have my mother in law see this.This past Thanksgiving (she had it catered and invited her kids and spouses and their kids - and the daughter married in July is now pregnant with her first child - she is also my god-daughter - and my mother in law all attended) but we weren't even invited! A situation where we simply would have assumed we would go - as we always have - something that has been a family tradition for over 30 years. I pre-empted the holiday dinner tradition (knowing how ill she has been and not wanting to add more work for her) and said that we were going to stay here for the 1st time in forever and have a small - just us 4 - family dinner. This was aparently not even necessary, as they had planned the event without us anyway. It is now very clear that she does not welcome me up there, and although she requires my husband do the handyman chores for their mom (this has always been the case and not a big deal), but now it is a problem as well because we always went together. He also feels that this sudden animosity towards me makes it hard to visit with mom, and due to her advanced age of 98+, my husband and I do not want to involve her in this - whatever "this" is!!! At 61 (me) and 64 (her), it seems a bit more than odd to have family squabbles at this point in time! Especially when I really don't know what exactly it is that we are "squabbling" about! She has even gone so far as to start to call my husband (her brother) only during the day on his cell, and never call the house, so she is certain that I will not answer the phone! He has tried to talk with her about this, but she only says that I upset her with a comment about getting a handyman for mom for the small chores that he cannot drop everything and drive 2 hours each way to handle, when we could vet and hire someone local to take care of these small tasks. We even offered to pay him. I thought that this would take some stress off everyone, but according to my husband, that suggestion apparently is what sent her up the wall!!! I am writing this missive in the hope that someone out there who is in HER shoes will see something in here that resonates with them, and will be able to offer ME advice as to how I should best handle this. I do not want to see our family of 40 years fall apart now, when she needs support more than ever, but I also do not know how to cope with her growing animosity towards me! I have spoken with my friends about this, and one suggestion that was made is that she is mad at me for not being the sick one - does that make sense??? While I do have serious, long standing health issues that have ruined our financial and other security as a family (I was the bread winner), I do not have what she has and therefore while I can understand what my illness has done to us, I can only imagine how much more hers has done to them. The financial income issues are not an issue for them, however, as she had already retired. Plus the grandbaby coming in March and the new resurgence of her disease apparently spreading like wildfire even while she is in the second treatment phase - has to make for desperate feelings. The big question remains fot me and for my family, and that is why focus on me? I was never a big part of her life in the past, but now I seem to be the recepticle for all of her anger and any other negative feeling! WHEW!!! This is really a lot to read, and I've spent 2 hour writing it!!! I apologize if I have taken up too much space and time, or if this seems a pitiful use of space, I am hopeful that this may be helpful to anyone who might be in my shoes, as well as to the patients who may feel this way about a family member and can share why here, but may not be able to share their feelings with the person in their life who they feel this way about! If this is the case, can you tell me what triggered it - why now? It has been suggested that - if she felt jealous or in some was=y had a problem with me before, she may now noit care what she says or how she says it, because she has the right to behave this way becasue she is sick - like all social rules are suspended somehow? I had been hopeful that we would be able to grow closer through thids, but clearly that is not going to happen. If it continues to go on, my mother in lw will unavoidably become aware, as our continued absence will be noticed - is there anyone out there who can - or is willing - to share their thoughts on this? I am hopeful that worthwhile discussion will hapopen about this topic, and I am ready to listen to what anyone has to offer about this situation I now find myself it! Thanks for listening(reading) and you are all in my prayers every day - God Bless - Karen
by maxxschiken on Fri Nov 30, 2012 12:07 AM
Here is my opinion coming from the viewpoint of a "caregiver" to my wife who in July 2011 was diagnosed with inoperable stage 4 pancreatic cancer w/mets to her liver. With regard to your situation and the lengthy report you provided is despite your sincere desire to make ammends or make things "right" with your sister-in-law, you have stated your family has never been "close" to her or her family and while you are part of the extended family in relationships, ultimately YOU ARE NOT PART OF HER SUPPORT SYSTEM. She's got one hell of a battle to fight with her diagnosis and to be perfectly honest with you, just stay away and leave her be. Leave the compassion and care for her situation to the many others in this extended family to deal with. Don't complicate her life anymore than it is already experiencing. Doing so would be the most compassionate thing you and your family could do. This along with your sincere and heartfelt silent prayers for her and her family can be the most effective way for you to deal with this situation. Also, don't forget to PRAY FOR YOURSELF!
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