iowagirl
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Lainy, Thnaks. I really wasn’t sure about the psychologist, but we have melded together pretty well. We tend to “go over” the allotted time…mostly me talking, but apparently, I have an “interesting” story or two from a psychology standpoint.
I don’t know about newbies looking up to me. But, I do think that unless you have your mental health under control, it doesn’t matter where you’re at as far as physical health…and vice versa. One of my degrees is behavioral psychology and a close family member was a psychologist, so perhaps I don’t look at talking to a psychologist with some of the fear that others might. The whole process is pretty interesting, really.I think maybe what we need to take from all of this, is that different people are looking for different types of connection as Marion suggested. I’m sure that some people will join every site for any possible crumb of information they can find. I wasn’t expecting the Facebook group to be like the foundation, but joined anyway, to see what it was. You never know what you might find and where.
And…I also agree with Nancy…..that while I’ll go anywhere to find more information, there is no place like home sweet home….the foundation. Prayers are wonderful and I believe they help, but we need solid, factual information to get through this awful cancer. There is a level of understanding here, that isn’t just different from FB websites for CC…..but for other websites about other cancers or other awful diseases as well. I did some research for a lady about another disease, and I expected to find something for her (I am the queen of the Google searches), but what I found was sorely lacking and totally disappointing. This site is just “different” than so many others out there.
I’ve been doing more thinking about this after having read Marion’s post. There will be patients and caregivers who are ONLY on Facebook….and don’t search further than that. They are so used to Facebook, they are comfortable there. It well may be that as time goes by, the Facebook groups evolve into something deeper, but for now, they are like a typical Facebook status page. which is familiar to a lot of people. The FB CC support group does mention the foundation and provides links now and then to topics so I don’t think they see themselves as competing with the foundation. It well may be that in the end, some of the people who “might only” have found the Facebook page, will come to the foundation as well, having found it through the Facebook page links. And, some of the people here may go to the Facebook groups for additional support.
Julie T.
Gavin….thanks for the reminder. I had forgotten about Giles. (Sorry Giles) I appreciate the link to the webinar and will check it out.
I’m working on the feeling better part. I’m starting to think about the “future”….and while I am very aware and won’t forget (how can we) that this cancer could return, I’m thinking about making plans to DO things….fun things when this chemo is over. That will either be tomorrow, a week, or a month, but by the latter, it will definitely be over. Then, I will have two months before the next scan to live life and hopefully, a good scan report will give me another block of time to leave behind the bad memories and enjoy family and the holidays.
Cathy, I do agree with you that the more sites there are for CC patients to go to, the less any particular one is able to do. It’s like when someone opens a store…say….a Cupcake Shop….when there’s none in the town prior. If they’re lucky and provide a good product, people beat down their door and they become a success. Then, suddenly 3 more Cupcake shops open because they see the first one do it and they think it looks like a great idea. It doesn’t take too long after that before all the shops go out of business, because their customer base is too watered down.
Something similar could go on with websites competing with each other for followers or members. However, in the case of CC, I think that there are duplicates from one site to another and thus, maybe not as much attrition as we might fear. I know I’ve recognized names from these boards on the CC Support Facebook site. I don’t think they are jumping this ship….I certainly didn’t. But….they may be as I was…curious. I was disappointed in what I found when I went there, but for some it may be all they really want…emotional support or just a “connection” to others in the same boat. I get that kind of emotional support from just placing a post on my Facebook status page….but I can see that if someone doesn’t have a lot of good, Facebook “friends”, then for this purpose, it may be a really good thing for them to belong to the support group to exchange prayers, etc.
Okay….I’m back. I appreciate the responses and thoughts …..mulled everything over….and Sat morning I woke up feeling some better…so followed my gut and waited. By Sunday afternoon, I was certain I was feeling much better…and by MOnday, I had more energy than I’ve had in quite a while. I felt like a curtain had lifted……like I had felt in previous chemo rounds…only about 5-6 days before the END of the round….not a week AFTER that, like now. The chills went away completely for at least two days and only briefly came back last night (which is far better than the 6-8 hours they had been).
Since I’ve been on Amoxicillan and Levaquin at the same time for the infected toenail (which is now healed) there’s little chance there’s an infection somewhere. I “think ” the chills are related to the lower hemoglobin. They were really bad the week my hemoglobin was down around 7,2, but I’m still in the 9 range and anemic.
Val, my chills are the same chills I got with the very first chemo….with the difference being, at the first chemo, there were two episodes of about 15 minutes each and then that was it. Each chemo round has created longer durations of chills. I just had an MRI on August 1 and have no evidence of disease/cancer, so my chills are not related to that. Thank you for sharing your experience with your dad. The dry heaves I was experiencing also started with the first chemo and each round, they continued progressively longer or more times a day. They would always stop before the next round of chemo was to begin though. This last round, they did not stop until this last weekend….on Sunday….at 3 and a half weeks after the start of the round. It is apparently all chemo induced.
My psychologist suggested that the chills might be an attempt by my body to bring my body temp INto the normal range . I did some research and discovered that anemia (low hemoglobin) causes low body temp. The chills are apparently just that….the body trying to raise it’s core temp. When the chills happen, my temp eventually (5-15 min) raises to about 98.2 and then suddenly drops back in the 97ish range again. Just very weird….but it appears that my body is trying to raise up from a temp that is too low and just can’t sustain it…..Not enough red blood cells to carry oxygen would be likely to cause this from what I’m reading.
As to why my chills have occurred late in the afternoon through evening, the only thing I can figure out is that in the morning, our bodies are fresh from sleep, during which our bodies repair themselves. Then, as the day goes on, breakdown occurs….and that’s also when most red blood cells break down as well…so when you’re already anemic…and you lose more, it may be the tipping scale to lower body temp and chills. That’s a total guess…..but it makes as much sense as anything.
As of right now, I’m in a holding pattern….I feel so much better than I did …or have…for a long time. At least I’m getting a glimpse of what it will be like again in several months. I’m hanging tough right now….and waiting until my appt with the oncologist tomorrow…..and dump all this stuff on her. If it is a matter of low hemoglobin, and if I start the last round of chemo tomorrow, I”m going to request that we do some extra blood tests after the day 8 Gemzar, which is where I started feeling awful a couple weeks ago. Then, maybe we can catch a really low dip in blood counts before something happens or shortness of breath gets that bad….and do another transfusion.
Marion, to answer a previous question you had, my tumor markers before surgery were all totally normal. In fact, all my blood tests were normal as can be except for diabetes/blood sugar (I’m type 2, insulin dependent). My alkaline phosphate was in the upper end of normal. That number has risen out of normal during chemo, but only slightly and it bounces up and down from about 110 to 132 (at the highest). I’ve discussed it with both my GP and oncologist and they both have assured me that it isn’t anything to worry about and is caused by chemo. It was actually slightly elevated after my surgery….which also was not unexpected.
I will check in with you all again tomorrow or Thursday…..as to what the oncologist says and if I started round 6 of the chemo. In any case, I will either be done with chemo or just have to get through two more infusions and whatever side effects for the next 3-4 weeks.
Thank you everyone for being here.
Julie T.Kathy, I joined one of the Facebook support groups out of curiosity. The info is not there….and it seems that more people there tend to concentrate on diet remedies and give them credit even though they’ve either had conventional treatment or are having treatment. It has been frustrating for me, as I want facts. I have no problem if someone wants to eat more nutritionally, but it isn’t always about that. I actually answered one gal privately and gave her your name, the foundation website address and how to contact you (she was looking for information about transplants). She never did get an answer from anyone on the Facebook site, unless someone else contacted her privately as I did. I know that once in a while, there is a post about the Foundation…something that was posted on this site. They also posted about the international study and Mayo….with a link to the Foundation for more information.
I don’t see all that many posts from people about diagnosis, treatment, etc. on the Facebook site, though there is some. It’s more like a lot of surveys….”Where are you located?” “What do you think caused your CC?” or “Are you a patient, loved one or caregiver.” It really isn’t something that helps a lot if you’re dealing with CC. The other thing is that there is a good degree of emotional support….prayers, etc. But, in general, it seems there is a real lack of information about CC and treatments by most of the people there. They are nice enough…and well-meaning, and if you are just looking for emotional support…prayers and such, it’s an okay place to go..
As for the number of members they have….I suspect that many are lurkers/readers only….as what I’ve noticed is that the posts aren’t that many and mostly by the same core group of people. ONce in a while, someone new posts about a problem they’re having, but that isn’t all that often.
It might be interesting to know if the people lurking on that site are also lurkers on the Foundation site as well. But, I don’t know if that is possible to know.
I haven’t seen the other Facebook site…..so I can’t comment on that one.
Yes, this site can scare the crap out of you…..but I’d rather have the hard core truth than a bunch of platitudes.
Iowa Girl…still riding that roller coaster
Needing more help/answers tonight.
First, Melinda….thank you, but right now, I feel far, far from strong. I’m feeling very lost and scared. Thank you for sharing about your weight gain and leg swelling. It helps to know that someone else had that as well. I”m assuming that they didn’t have any answers for that for you? I got the answer back from the thyroid test and apparently it was normal. The weight gain…much as I hate to think of doing it over again….I will lose the same pounds I lost over the past two years….but the edema has me worried…and it’s uncomfortable
Second, Porter…..so good to hear from you…..and glad to hear that you are starting to feel like you again. Also thanks for the idea of a reduced dosage of the chemo. I will bring that up next Wednesday if it looks like the numbers are in range. I’m very worried about them dropping again as much as they did this last round.
Okay….so here is the problem. I had hoped to be feeling better…that the transfusion would
fix “everything”. I just got done dry heaving again….and had been queasy off and on late afternoon. The last chemo was the gemzar on July 30th. The most worrisome thing though has been this continuing chills that I get every afternoon about 4 pl.m….that last until I go to bed. I chill for 5-20 min…then get warm…temp goes from 97.4 or so up to 98.8 (but usually 98.2)…my face gets warmish….and then bham…it’s cool again and the temp is again in the 97s. It’s very uncomfortable and lands me in the recliner with a blanket on all evening. Is this being caused by the hemoglobin being 9.5 . It was 7.2 when I got the two units of packed red blood cells, …which then raised to 9.5. But, that is still far under the low end of normal….being 12, I’m considering going into the ER again this weekend…….but they actually told me that 7 was the threshold for transfusion…..but my oncologist said to transfuse….so they did. I “feel” like maybe I’m a little more short of breath again. How dang long do the effects of the chemo last in knocking down hemoglobin?Help.
Caroline, I can “hear” the frustration, fear, desperation and sadness in your words. Don’t assume that you’ve lost out on time. I know that is fear and frustration talking. Where is your dad being treated? Get that 2nd or even 3rd opinion. I know that there are others on the boards who have more information about that than I do….getting records to someone for another opinion as quickly as possible and they may have some other ideas as well. I’m sure there will be other responses soon. For now, from me, welcome to the foundation website. You will find an incredible community of compassionate and knowledgeable people who have in one way or another been touched by CC. We all “get it” here and don’t judge.
Rob…..the wait is the pits…..so sorry for you having to wait for the answer you are desperate to hear. As Melinda said…keep living your life every day. I need to keep being reminded of that as well. It’s way too easy to feel like CC is drowning you in anxiety…..and we have to sometimes fight to stay above it. Try to stay busy with anything you can do to pass time and keep your mind off of it. Easy for me to say…..as I was a basket case for two weeks prior to my August 1, scan at Mayo and cried more often than I care to admit. I will be saying prayers for you that the next scan isn’t until September (that means you didn’t get sick) and that it gives clearer readings for the radiologist and doctors. Hugs…Julie T.
Kris…and All,
Kris….I know…it seems like I’ve had more than enough of the side effect crap. Even my psychologist told me yesterday that I’m in the upper 5 % of people (she specializes in oncology patients) she’s treated who have had a very large number of very tramautic things happen to them …and in a particularly short time. We’ve had stuff like this our whole married life though….and often have said, “Whatever it is, we’ll get the worst case scenario.”
I went to my chemo apt today as scheduled, mainly to get my blood labs done to see where I’m at as of now after the blood transfusions and a few days past the last tests done in the ER on Saturday.
My hemoglobin is now 9.5…up from 7.2. I have quite a bit more energy, though I still don’t feel like myself….but then, haven’t felt like myself for quite a while….the hemoglobin has been in the anemic range for some time.
The platelets bounced up from 50 to 123ish….so now they are in, just barely, the normal range.
The kidney function test was at 1.5 on Saturday and today is was 1.2. The high end of normal is .9-1….so it’s not that far out….and at least now trending back the right direction. It was not doing that the last several weeks….it was trending further and further away from normal. The Mayo oncologist did say though, that unless the kidney function was in the normal range, I should hold off on chemo.
Even though my local oncologist said it was okay to do chemo, I stuck with my decision (and Mayo directive_ to sit out a week and give my body some time to rebound a little more. I’m guessing that the numbers will be better yet next week and if so, then I will start round 6 and push on through it. If the kidney number is just say, a tenth of a point away from normal, I think I’ll go ahead….because at least it would show that the kidneys were trying to recover. I’m hoping of course, that the kidney numbers drop further than that….and they have a whole week to do that…with me drinking a lot of fluids.
I was able to walk farther today without a lot of shortness of breath. I still had some…but not the gasping for air…bent over and afraid like last week. I’m still having problems with chills….no temp….even though I suddenly feel warm after a chill lasting anywhere from 3 min to 20 min. We’re assuming that the chills with no temp are associated with the anemia that I still have with the hemoglobin at 9.5. I would have thought it would have gotten some better though…but instead, I’m now wearing a spring coat in the house tonight to stay warm enough and stave off the chills. Another cause for the chills could possibly be my thyroid suddenly shutting down…which would also explain the 25 pound weight gain during chemo….with about 12 of those pounds going on in the last two weeks. The swelling in my legs has also not subsided. That is really driving me nuts…..esp the leg that had the blood clot and is susceptible more to swelling. It had gotten to the point for a while…maybe the month of July, that it wasn’t swelling much anymore…enough to put on a compression, but it was comfortable. Now, it’s even swollen in the foot area and toes…and all the way up to my knees and maybe further. The other leg swells, but not as badly. I asked for a TSH and T4 Thyroid test to be run today…which they did…so I hope to get that answer back tomorrow. Otherwise…I don’t know what is going on….if the hemoglobin is maybe still too low and is still straining my heart?…..and that is what is causing the swelling in the legs. In that case…..I would wonder why not transfuse more blood.
So….this will be a week of drinking lots of fluids….trying to keep my legs elevated when possible….and enjoying a bit more time out and about. I am still dry heaving every morning (and sometimes before bed), ….which perplexed the oncologist…..because she said it shouldn’t still be happening this far out from the last chemo. Whatever…it’s still happening.
Julie T.
Randi……OH WOW OH MAN ….what fantastic news for you….for all of us to hear. I was feeling sort of down and this is a real picker-upper.
Julie t.
Lainy…yes….I do feel better….like a fog has lifted is the only way I can describe it. All the shortness of breath isn’t gone….and might not leave…depending on how the two units of blood did to raise my hemoglobin. I was talking with my mother in law tonight…to fill her in on what happened over the weekend….and to check on her as she has some medical issues also. I noticed that after I had finished telling her about what led up to the transfusions, I felt slightly winded. Okay…no jokes please. I type like I talk…and talk like I type…..long winded I guess.
But yes….at least I don’t have the awful feeling that I can’t get enough air….and….I just realized that I haven’t fallen asleep all day…..except for about an hour during the transfusion after I got Benedryl (in case of a reaction to the blood). That hasn’t happened for a long time.
Julie T.
Lainy, Thanks for the suggestion about the mask. If there is any doubt about his health….the kids haven’t brought him over since I the CT that showed the tumor. There have been a couple times that it was questionable…but the poor little guy has inherited bad seasonal allergies from both mom and dad….both sides of the family are cursed with stuffed up noses year round. So, sometimes it’s hard to know which is going on. Hopefully, I will have better blood counts by the time the cold and flu season is upon us again …though I still plan to be careful. Facetime on my ipad has been a wonderful thing….as we’ve been able to “see” each other through all of this even when someone has been sick. It doesn’t take the place of a real hug…or little one sitting on your lap…but it’s pretty good. The wonders of technology.
I have a friend bringing over supper tonight…..enough for leftovers…and apparently another dish ready for us to put in the oven after that (I assume it’s something to freeze). She had volunteered this before I ended up at the hospital…..and apologizing for not doing “something” sooner. Sigh. Somehow though, it’s people like she is…..who do something special…and they’re the busiest people you know. They just always seem to find time to do something extra. Anyway…no cooking for us for a few days.
Oh…she just came….sloppy joes/buns, lettuce salad, potato salad, beef stroganoff (enough to feed an army…going into the freezer for later this week) sweet corn on the cob, cantaloupe , and strawberries with angel food mini cakes. Good heavens…..There’s enough here to last us the entire week and next week for just the two of us.
Old time friends are good to have.Gavin, I feel guilty sometimes, taking up the storage space on the website, but yes, I have found many times in the past, that writing things down to someone else, has helped me think things through in a more objective manner. I love the mysteries of our family history/genealogy and it is so true of that. However, it is one thing to be objective about genealogy…and quite another about a life and death decision.
It’s interesting that you mentioned your mom’s pneumonia and causing her 2nd heart attack. I had not heard about that being connected, though now that I think about it, I don’t know why not.
I have to be especially careful also with the swelling in my legs…and nailing down the cause…because I had a heart attack in 2002…one artery 100% blocked….lucky to be here. But, the low red blood cells due to chemo (if the doctor is guessing right…and I assume he is) cause a stress on the heart…which in turn causes swelling in the legs. Of course, damaged kidneys can also cause swelling in the legs, but they don’t think my kidney numbers are bad enough to cause my leg swelling. I do NOT want another heart attack …though honestly, it was a lot simpler to go through than this cancer crap. I suspect that in a few days to a week, my leg swelling will go down….as long as the red blood cells they just transfused hang around.
And yes, my husband did go for a bike ride…and yes, I did go out in the car. It wasn’t much….just to a toy consignment store to drop off something the little grandson didn’t need anymore to resell. It wasn’t a far walk….maybe 50 feet total….but at least I was out and it felt good to not be tied to home.
