August 2015 Chemo Group
Comments
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Notdoneyet, I've had some pain in that area on and off for years. Until I started chemo, my liver enzymes were always perfect, so I wonder if it's gas or some such thing. I've also had a gurgling sensation in that general vicinity (I call it "alien baby"), on and off since my last tx.
I'll ask the doc about it on Wednesday when I see her. Definitely mention it to yours, too, just so s/he knows about it.I worry about my liver, too. But everyone (doctor, NP, etc.) says that it's normal to have liver inflammation, which could include mild pain and elevated enzymes, during TX. The liver is a pretty miraculous machine; it'll clean and repair itself when TX is over.
I can't wait for normal blood work!
And hair!
And symmetry!
And all of the things I took for granted before I had to slay this beast.
Beware the forthcoming long-winded post. . . .
Even though I said I was overly-busy at work, I feel like I need to get this out, and I know that so many of you will understand, and that means the world. 2015 has sucked. Just completely sucked. My partner and mother-in-law have been estranged for months now, after having been very close for years (for reasons it would take me all day to type); two of my best friends are having relationship problems; another good friend is struggling with the progression of MS; money is tight; my brother-in-law just got out of inpatient rehab. My 52-year-old uncle, who has Asperger's and has never worked a day in his life because my grandmother tried in vain to protect him, is running out of money and being denied for government aid. My dad is in serious mental and physical decline from Parkinson's--among other things, he's now hallucinating/dreaming even when he's awake, and his short-term memory is all but gone--which cuts me to the core, and my mom, who retired four years ago after looking forward to it for a very long time, is trying to manage taking care of both uncle and dad.
My dad has said for years that he'd rather die than live in assisted living. He's terrified that he's a burden to my mom, and yet he IS a burden to her. . . . What a mess. I'm an only child and it's complicated, as all families are; my mom and I have only gotten close since I was about 20 (my dad did most of the child-rearing when I was a youngster), and we're both grieving--really grieving--the loss of that strong, scary-smart, charismatic man he used to be. . . even though he's still technically alive and has moments--flashes--where he's who he used to be. Neurological diseases are evil, evil beasts.
I offer to help my mom, even from a state away, but she doesn't want to stress me out because, oh, hey, right, I'm in treatment for hyper-aggressive and scary triple-positive breast cancer. I find myself not telling people aspects of my condition, I think out of a desire to protect them; for example, BC is a chronic health condition that, in my case, will have to be monitored every 3-6 months for at least five years. I don't tell people how terrified I am that it will come back and take me out before I'm 40, or how beaten down I feel about half of the time, or that I'm afraid to do things like buy a house (we're in the market for one right now), because I can't get enough life insurance to cover the mortgage if I die. I don't tell people about how much it pains me that BC is a full-time job, which means that I find myself with no time to create and haven't since about June--I'm a writer who isn't writing, which feels like being mentally and creatively constipated. I feel the creative urge, but nothing comes out when I sit down to make it happen. (Haha--insert constipation joke here!)
I've dealt with grief before, having lost an aunt with whom I was very close (to cancer), my grandparents, and two of my most-loved pets, but this is new territory for me, as is acknowledging and naming these feelings. I used to channel them into creative action; I wrote a novel following my dad's initial diagnosis; I experienced a flurry of visual creativity following the death of my grandmother many years back; during and after my first marriage ended, I wrote a lot of music. I keep hoping that brilliance will strike me at any time, but I'm also physically, mentally, and emotionally exhausted at this moment in time.
I'm not typically so glum, other than those days when I'm coming off of dexamethasone, but the phone call from my mom this past weekend sort of sent me over the edge, and I felt myself shrinking back and away from the world. I think that's part of why I'm typing this right now: vulnerability is good and important and necessary. I'm trying very hard to manage my emotions. I'm not sure if it's the lack of hormones (thanks, chemo), but I feel more inclined to cry these days than I ever have. . . . And it's weird. I feel very strong emotionally and relatively okay physically, in spite of the fact that going up two flights of stairs makes my legs twitch like I've just done six sets of heavy squats (something I used to do), but I have these moments of stark vulnerability and loneliness, even when I'm surrounded by people I love, that are hard to put into words. If not for my partner and my students (who are 18 years old and who, for the first time in my career, I have oddly maternal feelings about) and my yoga group and my online support group, I'm not sure where I'd be.
Anyway. I'm not sorry for rambling, but I do thank you for reading and for your kind support from afar. I should say that all of this crap is tempered by a lot of love and gratitude and a newfound awareness of beauty and calm in the world, especially in nature.
I guess I end by saying this: the universe has my attention, and I'm listening.
Much love, ladies.
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Kate! Thank you for your post. Not just the reassurances about livers but all of it. I totally get you. I am an artist who hasn't created a single thing since spring and I feel like THAT might be killing me (rather than the cancer which somehow I feel I can beat, despite ridiculously low odds in my case). I feel all crunched up in a weird way, like I can't breathe and I need to move around but I don't want to. So, yes, all of what you have said resonates. When it rains it pours, too, I've found.
How long have you been doing yoga? I have never done yoga but have wondered if it would help. I feel this need to be centered and to be open but I feel this instinct to be hunkered down and closed up. Maybe yoga could be part of the solution.
Creativity is life, we all need to find it again.
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Mama bear- I agree with MS Brompton. If you are fevering and feel well it's not so bad. I spent 4 days in hospital on IV antibiotics after cycle 3, for febrile neutropenia. They couldn't find a source of infection and let me out of the hospital once my neutrophils came back up. I was discharged without a fever and the first night home woke up with another fever. I called my MO who was off that day, the nurse told me to go back to the ER. I wasn't doing that....I didn't want to pick something else up and I knew my neutrophils were good. I did go to my family Dr. He said my body was probably just having a reaction to the chemo itself. It was trying to clean all the damage up that the chemo had caused. He said as long as I felt OK to just hang tight. That the fever would pass. But to make sure I was drinking enough fluids to not get dehydrated. Also to drink some Gatorade to replace electrolytes as drinking too much water can mess your electrolyte balance. It dilutes everything out(I'm a lab tech and have seen this in lots of patients). I hope it passes and you are feeling better soon.
Notdoneyet-Have you tried any probiotics for your GI troubles? I have used them along with increased yougurt in my diet and they helped me when I had issues.
Kate-you have lots on your plate. I too have a step dad with Parkinson's. My mom had to put him in to long term care as she was unable to care for him. He was unhappy about it but it was affecting my moms health. She had to make the decision to take care of herself first. She had no support from his children to help out or offer the occasional respite for her. It is a terrible disease that robs you slowly of everything.
I have no creative juices flowing. I basically feel like doing nothing. I still feel lousy from my last chemo. Thurs will be 2 weeks since my infusion. I am giving myself until the end of the week to feel better. I remind myself that 3 weeks ago I was in the hospital. That if I am following the same path as last time by Thurs my Neutrophils will have recovered and I am good to go. I haven't had any of the Neupogen shots that many of you have post chemo. I have been able to recover on my own. Being that I am not working I can stay home and away from most germs.
I can't wait to get back to the gym and resume normal life activities. I feel weak and tired. I get played out so easily. I just want to feel strong again. I am tired of being sick and tired.
Well I hope you ladies have a great day and continue to be cancer warriors. Keep fighting!
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@Moma-bear: In August, about one week after DD AC, I woke up with a fever well over the 100.4 threshold. I went to ER, where triage nurses were totally unaware of protocols for chemo patients presenting with fever. Thankfully, a competent doctor stepped in and I was diagnosed with febrile neutropenia. This is a life-threatening condition and must be treated promptly and appropriately. In order for the doctor to make the diagnosis, a complete blood count and urinalysis was conducted. In my case, the neutrophils were 0, and I had a fever, This means there was infection that my body was unable to fight because of its compromised immune system. Several days in the hospital on IV nutrition and antibiotics, followed by oral antibiotics cleared things. Although they ran many tests to determine the infection source, they weren't able to find it, which is typical I was told. I was given Tylenol after diagnosis in attempt to lower my fever and make me more comfortable.
Did you have a CBC done while at the ER? According to the doctors there and my OC, it's the only way they know if the immune system is compromised. I suppose that if it's not compromised, then Tylenol would be appropriate. Either way, it's not something to take a chance on. I hope you feel better soon.
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Kate, you write brilliantly. What a plateful. But you WILL get through chemo and be back to the old Kate. And then you'll have much more emotional energy for all the other STUFF they're throwing at you. How many of us were [are] the lynchpin of an extended family, trying to fit our own breast cancer in around everyone else's needs/baggage? My Occupational Health nurse told me "you must prioritize". That's hard for someone who (before getting ill) was able to multi-task and juggle all the crap from friends and relatives in need. But I'm starting to do it. "Sorry, I sympathise with your medical / financial / emotional predicament but on this occasion I can't help." SO hard to say when you know someone might suffer as a result of you not helping out, but for SOME of those needy people who are putting on you, that response may be necessary on this occasion.
And sio, you win I think. My neut count never went actually to ZERO!!
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Gosh, I'm overwhelmed by reading everyone's situations. Love goes out to all of you.
KateB, you write so expressively, and that creative constipation is no fun, so here's my prescription for you - NaNoWriMo! National Novel Writing Month. No plot, no problem. Write 50,000 words before November 30th, you win. No need to show your writing to anyone or do anything with it once NaNo is over, but it does sort of force your hand. I did it a few years back; it was a fun, no-pressure outlet, and actually I ended up writing about stuff that I didn't even realize I needed to write about. That was a bonus. Just a thought.
The other thought I have is more for your dad, because I know he said he'd rather not be in assisted living, but it has been a lifesaver for my dad, as well as for me and for my mom. Dad wouldn't recognize himself if you showed him this picture of his life, but on a day to day basis, he's happy. The carers are wonderful, he likes the food, he gets along well with the other folks who live in the building. As long as he's not in the grips of a delusion (they come and go) he's perfectly content. There's no way he'd have thought he'd be happy in this situation - like your dad, he was dynamic, always on the go, always in charge, the man with the plan. But you know what, disease can change things drastically. As we are all finding out!
MsBrompton, that issue with your vein sounds nasty! I hope you can get it taken care of quickly.
MamaBear, I hope you'll get your fever seen to, as we've seen from some of our friends here, it's nothing to mess around with.
DeeRatz, I am flat-out amazed that you have been doing this at all without Neupogen or something to bring your WBC's up. If it weren't for Leukine, I'd be on the floor all week long!
I was told by my naturopath not to run, so running is out for now. I have to break that news to my physical therapist today, along with the fact that I just haven't had enough energy to stick with the plan he set out for me to get back to running. I will have to wait for a few weeks before running is OK again. (It has to do with the peripheral neuropathy, I gather.) Just have to be patient, patient, patient.
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Birdysmom you post the funniest pictures. But the last one should come with a "Work Place / Beverage" warning! I was at working, drinking tea at my desk...
My mom used the "Cancer card" to skip Thanksgiving at my uncle's in Los Angeles this year (I didn't tell anyone in the family other than parents & sister). So my uncle & aunt now know & my cousins.. Just received a "Lovely" bouquet delivered, from my cousin. Appreciate the thought, but the flowers are PINK!. & I've NEVER been a pink person, I don't have anything in pink! My cousin was like, "wish I have known sooner" .... I thought... maybe this is why, we didn't grow up together, I see you like... 2 times a year...
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Mom2aboy-I have been flat on my back....literally have done nothing since my last treatment. I am giving myself to the end of the week to feel better.
Superius-that is a tough one. The thought was nice. I felt like a flower shop here for awhile. It was a steady stream of flowers. I was glad when it stopped.
Almost thru all 4 seasons of Suits on Netflix....since Oct 22. Ready to get out of the house.0 -
hank you all for the thoughts!!!!! I did go in today to get seen. They said since I was on an antibiotic for 6 dAys I am fine and they believe that I have a viral infection. Nothing they can do for that. Keep taking the Tylenol and follow up on Thursday. Which is also my treatment day. I had to miss last weeks due to the fever and antibiotic and I cried! I do not want to miss another one! It is such a roller coaster!!!! It seems so odd that when I was on A/C I had no problems and now on taxol a stupid "cold" is keeping me from treatment! Stupid cancer!
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mama-bear, hope you get over this soon. I had a very distinct pattern of having to delay every third weekly treatment when I was on carbo/taxol and I cried at least twice, it's such a disappointment when you want to feel like you are moving forward with this thing.
So, all, how tired and crappy do you feel and are my expectations just too high? When I was on carbo/taxol I felt crappy for 4 days then felt better and felt literally fine on taxol weeks (even when my counts were low I generally felt OK). This combo (FEC) has me on my ass. I am now 10 days out and still feel like crap. Nothing like last week but still lousy. I am going to call today to talk to the nurse just to see if this is "normal" (and I need to call about my prescriptions anyway) but thought I'd ask you all first. FEC is probably very similar to AC as far as side effects go, from what I can tell. Ugh!!!!
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arrrgh. Heading to hospital for temp 100.5 (it has gone up half a degree an hour so no point in waiting). Will get blood work and see what's going on
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notdoneyet- hang in there. I hope they figure out where your fever is coming from and you feel better soon.
Mama bear- love that tatoo. That's how I feel about cancer too
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I mentioned my mom was using the cancer card...
I just got voicemails from my 2 cousins, whom I don't see / interact other than thanksgiving/ Chinese New Year, "let me know you want to chat" & it seems they are under the impression that I "am starting/ in the process of" chemo... Geez.....
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my doctor decided not to admit me just yet. Getting IV fluids and a course of oral antibiotics just in case. My neutrophils? 0.04! What?! My hemoglobin is 7.2, no wonder I feel like crap! Next time I will get neulasta (he thinks he can get me the auto injector since I drive an hour and a half each way).
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notdoneyet- I can't believe they didn't admit you to the hospital. Mine were 0.02 and I was in the hospital for 4 days on IV antibiotics. I would suggest if you are still running a fever and feel bad you need to go to the ER. You have no immunity right now and are not able to fight anything off yourself. I hope it passes and you feel better. Just be careful around anyone, frequent hand washing.0 -
thanks DeeRatz, I have been thinking about you and your hospital stays all day! I am going home to seal myself in a bubble. Or something. With a thermometer.
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Wow, notdoneyet, I'm so sorry. What a nightmare! Stay in your bubble with the thermometer. Sending good vibes your way.
Deeratz, we just started Boardwalk Empire about two weeks ago and are now at the end of season 2. But you win, I think.
Superius, that's a challenge. Have you decided whether/how to respond?
Mama-bear, I love the tattoo.
mom2aboy, I'm doing NaNoWriMo. Gotta finish the draft of this second novel!
So, I saw my oncologist today but won't get chemo until tomorrow. She seems unfazed by the weird tongue neuropathy and doesn't want to reduce either taxotere or carbo, given that I only have two more rounds to go. My hemoglobin is lower than it's ever been (10.5) and my platelets have also dropped--both SEs of carbo--and I can really feel it this time around. Bone pain at carbo nadir, which is about ten days later than the tax nadir. One liver enzyme (ALT) still rising. She said it's all normal. Me no likey, but whatever. Only two to go.
She wants me to do the big, long 25-gene genetic test BEFORE I meet with a radiation oncologist and BEFORE I start Tamoxifen, in case I'm BRCA+. I have really mixed emotions--not about BRCA, but about the others. I'm not sure I want to know if I have weird mutations. Do any of you ladies have thoughts about the Myriad MyRisk test?
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I think this uti is coming back
Last friday it began, the gave me a 3 days script of cipro, mon, tues normal now today at about 5pm I go to the bathroom and there is a hint of it. Not peeing needles but the hmmmmmm thats odd, and why why why... So I hope its tolerable through the night and I will have to call tomorrow Is this common? Was 3 days of antibiotic not enough? I have a big weekend and do not want to be dealing with this. I don't want any trouble when I tell them its back. blah... I am so ready to be done with all this ...
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Kate, you are already planning a second MX, right? I thought that was the key reason for doing the testing. At least that's how my surgeon put it--do the testing and if you have genetic risks do the double mastectomy. If no risk factors then lumpectomy, in my case. I did the Myriad MyRisk and now my insurance is fighting paying for it--was not supposed to be run unless it was under $375 out of pocket for me or I expressly approved the cost. It was run anyway and now they want me to pay $6,000. (My surgeon is going to bat for me.) I have one gene anomoly but statistically is of unknown risk so we treat it as negative.
I am sorry there are so many bad SE getting us. My neuropathy is more consistant/constant, instead of coming and going, but not as intense. Not sure what kind of trade that is. The tips of my fingers do not like typing. My youngest has been on anti-biotics for 3 days and should not be contagious, but his fever will not give up and go away and his cough is terrible. Today was supposed to be my worst day, and while not as bad as previous cycles (since we have lowered doses so much), I feel flu-ish and have deveoped a cough. Tomorrow is a Herceptin/Abraxane day. Hoping to confirm I can skip cycle 6 and schedule my lumpectomy next Tuesday when I see my surgeon.
Superious, don't let what others are doing get to you. You can only control you and your response. Choose to take their calls as genuine concern and care and move along. Let them in as much as you are comfortable with since that door was already kicked in for you. The shock may have brought them out, but in my experience everyone tends to move along on their merry way pretty quickly. Speaking of, how is your friend?0 -
My MO (& the genetic counselor) also recommend doing genetic testing due to my age & there's NO family history. So I am reading up on that. Are there other tests beside the one mentioned (Myriad MyRisk)? Those who are still in treatment & having all these SE, hope you will feel better soon. I was still carrying the thermometer until last week, 1 month after last chemo. & still freaking out with every ache & pain... <what is this, should I call the nurse!>
Regarding my cousins, since I totally NOT a phone call person, I think I will just email to tell them the basic. Like I finished active treatment -- had surgery & chemo, starting hormone therapy. doing well. Have good support from friends at church... maybe a few more details. I know that I have to eventually tell them, especially if I'm doing the genetic testing.
Musogirl: About WorryWart, he's doing much better, consider his reactions to chemo (angry & frustrated, besides worry). There were a few extra events at church in Oct, so we have been busy, which helped us getting back to our old normal routines. I'm glad! (we belong to the same ministry at church) I update few of the closer friends at church from time to from (including WorryWart), so he is very up-to-date for what's going on. My last update was this week about starting Tamoxifen and about thought on BRCA & Reconstruction. Even though I was writing to a few friends, I feel that I was writing to WorryWart in a sense.... Here's what I wrote in my email:
"Reconstruction - NO. Even the basic information read like Halloween horror, multiple long hour surgeries, months & months of procedures... couldn't find any info about posture, only balance in appearance. Just for appearance? Why bother, no one else sees it anyway! I don't even have my ears pierced or wear contact lenses! This jumped out from my reading from a support website: "What do partners of breast cancer patients care most about? In spite of what you may imagine or fear, studies show that the answer is simply this: Their loved one is alive and feeling well. The loss or alteration of a breast is almost meaningless in contrast. 'I don't care what they take from you as long as I can see your face," is a common sentiment.' I also read about here's a lady said she would rather be the one going through the treatment herself, than seeing a loved one going through it. She wrote that she was always putting on a happy face when her mom went through treatment years ago; and noticed that her husband is doing the same, "suffers in silence". Obviously, those commends were about life partners, but I recognized the emotions from those around me. So... I think, since I'm fine without reconstruction, I'm not going to put them through more torture... It's over! I liked that there were so many events in October. Definitely hitting the "PLAY" button again & moving forward! Looking forward to all the celebrations end of the year!
"The Torture Is Over" was the first thing WorryWart said to me after the last Chemo. I definitely put those words in specifically -- wonder if he recognised his own words?? Wherever we are heading, I don't think he would do well with Recon emotionally, he barely hung on with my 4 chemo. Well... we have 2 wedding Receptions to attend end of the year. So it would be interesting when we're out of our usual routine... We Introverts move slower than... lava? honey? molasses? ... no... Maltose! So don't expect much. LOL...
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Kate- how elevated is your ALT? I would be worried if all of your liver enzymes were elevated and you started turning yellow(Bilirubin). It is normal to have some elevations in your liver enzymes during chemo. I used to see these results all the time when performing bloodwork. They should return to normal post chemo. Your hemoglobin and platelets are taking longer to recover. Just remember that the chemo hammers out your bonemarrow. As your treatments go along the effects are compounded. You body has a harder time recovering.
Notdoneyet-I hope you are slowly feeling better. Living in a bubble and staying safe.
Gooseberry- drink cranberry juice, especially before you go to bed. This helps with UTI's. You can also get cranberry tablets at the health food store. Hope this helps your not so fun UTI.
Musogirl- do you ice your fingertips and toes when you are having your Taxol infusions? I iced mine for my treatments and didn't have any Neuropathy. I also sucked on ice cubes and have not had any problems with mouth sores. I hope you start feeling better and don't have the flu. Sending healing vibes.
Superius- email is a good way to inform everyone. I actually started a blog when I was diagnosed. I update it occasionally as I was sick of telling people the same thing over and over. I send them to my blog and they can get the whole story. It was actually therapeutic for me to write it. It felt like I was freeing myself of a lot of the stresses and feelings I was having at the time.
Reconstruction- For me this was very important to have done. I had it done at the same time as my BMX. It made it an easier transition for me. I woke up with breast mounds post surgery. I wasn't totally flat. For me that's what I needed. One surgery and I was done. I have had all my fills in my expanders and will have surgery in Feb to exchange my expanders for implants. I do wear bathing suits in the summer and am quite active at the gym. I didn't want to be worrying about loosing a boob while snorkeling or diving off a boat. Didn't want to be bending down to grab some weights and loose a boob. It was a choice that fit my lifestyle and I have no regrets. I would have had a way harder time with this whole process had I been unable to do the reconstruction. My scars are very minimal and light.0 -
So sorry some of us are still in the middle of scary and unpleasant side effects. (My extravasation reaction by the way is getting better).
I'm fascinated by this thread on reconstruction. I'm about to go in for plastic surgery and wondering whether it's all a bit unnecessary. I already have an expander on the left so that will become silicone, and the guy is going to fiddle around to 'balance' my boobs and make something that looks like a nipple. Superius, the quote you posted above reflects exactly what my husband feels - he really doesn't care if I have one boob bigger/higher/rounder than the other or whether I have one nipple or two, he cares that I'm alive and wants me to be happy. I too am more interested in being able to get back to the gym/pool/office (in that order!!) than whether I fulfil some ideal of femininity. But having booked this operation I'm gong to go through with it. And then call the whole experience a day.
ANYWAY, mastectomy is the new normal. In the UK they used to have a page of mastectomy swimsuits in the Lands End catalog (maybe they still do). So it's like the paralympics. Some women have two boobs, some have one, some have none. Deal with it, society!
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DeeRatz The images of "loosing a boob while snorkeling or diving" made me laugh! Instead of like people losing their bikini floating away! oops, there goes a boob. LOL...
MsBrompton That quote is from right here on this website, in the Treatment section. It brought tears to my eyes every time I read it. My elderly parents (ok, not TOO elderly - they are in their 70s) definitely won't like that idea of multiple procedures if not necessary (read: life or death). But my friend (he's non-S/O WorryWart here on the board) wouldn't like that neither -- judging by his reactions Post-Surgery/Post-Chemo (elation, his whole face lighted up, mischievous) vs When I told him the diagnosis/Before Surgery/During Chemo (angry, frustrated, worry, trying to hold back, putting on a "happy face") He's very reserved about his words & emotions, so that's showing a lot. (we are both introverts, so I recognized the same way I might act...)
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Superius-jumping off the side of a boat into the lake and have your boob fly out. Yeah that's the kind of thing that would happen to me. Glad that I won't be having that problem. I can also wear low cut shirts without a bra and not worry about showing any nipples. Boobs that don't sag....have to look at the silver lining
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Flying and floating boobs were just the laugh I needed today! Thanks girls!
On the topic, when I first met with surgeon I asked about reconstruction immediately, during surgery. But then I had to do chemo first, and the more I read the more I decided I would wait--maybe not do it all. And not bother with foobs. Don't really know. For now I am doing the lumpectomy and am going to ask about a reduction. I try not to think about recurrance--total meltdown taking a bath last night--but I will go for a BMX if that happens. I'll ask DH about going flat if that time comes...
Well, no official decision on cycle 6 yet. I have to have an MRI first and MO will consult with BS. The order from last week got hung up somewhere but my nurse was ON it today so I have my MRI Monday morning and my BS should have the results by the time I see her Tuesday afternoon. Come on clean MRI and no more chemo!
I am not feeling any better. I know it's not the flu--I got my vaccination and DS was tested for it last weekend. His fever is showing signs of breaking--very stubbornly coming down. I, however, got home from my infusion, had dinner, and was suddenly sweating around my neck and back in a weird way. My temp is hanging out at 99 right now. yay Took ibuprofen but we'll see what happens. Maybe just a fluke reaction to chemo or steroid today? My counts were good today though.
Superius, an email sounds perfect. I used to be very close to my cousins, and I haven't heard from them at all. Hello! Even a FB "I acknowledge this event in your life" post (on my secret cancer page or private message of course) would have been appreciated by me. One of their wives did mail me some giftcards for food, so there was that... Also, over the past few months you seem to have become...hopeful...concerning WorryWart. Just an observation. You seemed surprised and uncertain when he freaked out at first, but now you write like you are simply waiting for him to figure it all out because you have.
Gooseberry, did you call? My DH has had to do back-to-back rounds of steroids before (pneumonia) and my DS is currently 4 days on steroids and still has a fever. Hope you feel better!0 -
Yep, I called first thing in the am. I had to run to my PCP for a urinalysis. Finished by 9 am. The nurse calls back at 4pm and says your urinalysis is not back so I will call you tomorrow and we will decide what to do... Um what? Scuse me, I called you when it was tolerable, now 7 hours later I am peeing fire and my sides hurt.... what do you mean you will call me tomorrow? She said something about the doc wanting to match up blah blah and I was like um no. So she hung up to talk to the doc and then called me back with a Bactrim script called in.
I cannot even believe they were going to leave me suffer all the way till tomorrow and she prob would not of called early, they never do... and then that risks me getting a fever a kidney infection... Sheesh...
Not feeling better as fast as I did with the Cipro but been assured but friends and family I should see some improvement by tomorrow morning... hope so... like satans sitting in my lap up in here...
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Floating foobs and UTIs, oh my!
Having a sense of humor is a must.
I have one chemo to go. Day before Thanksgiving. That means (I hope) that I start to feel more human--aka less physically exhausted--by Christmas time, when we visit friends and family.
My MO wants to do a full genetic testing panel, given my interest in another UMX to even myself out a bit. I shared my hesitation--why would I want to know about some weird mutation that we can't do anything about?--and she put it to me this way: just because we can't do anything about it right now doesn't mean that one day we can't. I agreed to do it, if my insurance company will pay for it; she wants me to do it ASAP, but I told her we need to wait to see if I can get approved for life insurance first. Oh, adulthood. How you snuck up on me.
I suppose it's good to know, either way, so that we can make educated decisions about my ovaries. There's more than just BRCA to consider, and my age (36) means I'm "high risk." Not something I ever wanted to be, but whatever.
The good news is that, regardless, I won't have to start Tamoxifen until after the holidays, and I've all but decided not to do radiation, though I'll have a consult with an RO anyway. This means I'll have a break from everything but Herceptin for just over six weeks! Yay! I never in a million years would have imagined that something like that would make me so happy. But it does, given that this crap has been dominant in my life since the middle of June, when I found the lump. I know you ladies know exactly what I mean.
Re: liver enzymes . . . DeeRatz, my ALT is up to 91, and my AST is also very slightly elevated. My MO says she'll cut back chemo doses or delay by a week if the ALT goes up to 120 or more (1.5x the upper limit set by the lab). You and she concur that this is likely related to chemo and that the enzymes will come down afterwards. I hope so! She laughed when I asked if we were going to fry some onions to go with my liver. . . And then told me that "frying" my liver would mean that all of the other liver markers, including alkaline phosphotase, albumin, and bilirubin, would be elevated--and they're not. All three of those are solidly within normal boundaries. So we're not frying my liver, but we're pissing it off, and it's showing us that in blood work.
Her fellow asked if I drink a lot of alcohol or take Tylenol. I replied that I had one beer in three weeks and took a total of 2 200mg ibuprofen tabs in the same amount of time. He was puzzled. She was unfazed. She told me I can continue to have my one beer and take Tylenol if need be for bone pain (which I have, in my hips and legs, a lot of the time), but I think I'm going to be responsible and abstain from both this round.
I've decided not to worry, at least not right now. I can explain the fatigue and bone pain (low hemoglobin caused by carboplatin) and the liver enzymes (probably taxotere), but all other systems seem to be a go. I'm honestly impressed by my own body's robustness. It keeps taking such a hit, and mostly comes back. . . .
Have a great weekend, everyone. Gooseberry, I hope you start to feel better soon and, superius, I second the "small email is adequate" motion. Musosgirl, my temp hangs out at 99 most of the time these days; I think it's a chemo-pause thing, and my doc agrees. Feel better!
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Kate- I agree with your Dr's re your liver enzymes. If they were 10x elevated I would be worried. Your ALP, AST, GGT(is elevated in heavy drinkers amongst other conditions) Bili is normal I wouldn't be too concerned. You have to remember reference ranges are made by a random sampling of patients. Your normal ALT may be on the higher end normally. So the chemo is just tipping you over the top of what we consider "normal". I'm glad they are looking into it for you. I have also found that ibuprofen has been more effective for me with my bone pain. You could try switching to that as there is less effect on your liver. Yay on one more chemo to go. You are nearing the end.....the light at the end of the tunnel is getting closer.
So I guess I am a rebel. I have went out 2 nights in a row. Wed night went for supper and to a concert with friends. Last night went out with a few friends and had a few beer and visited. Feels good to be back in the land of the living. I think I am past all of the effects of my last infusion. My beer tasted like beer and my wine tasted like wine. I am even going to attempt Costco today. Live on the edge.
Gooseberry-I hope your Bactrim kicks in and you stop peeing razor blades. Not fun.....dislike.
Musosgirl-I hope you and your family start feeling better.
I hope you all have the best weekend that you can!
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Hey guys. Just caught up on the last 4 pages. I've been taking a bit of a break.
Happy for those of you who are done chemo, happy for those who are done another treatment, happy for everyone to be progressing if it's only a day at a time! But I totally get the feelings of jealousy. It's like when I was trying to get pregnant and everyone and their dog was getting pregnant. I was happy but super jealous. It's a total normal feeling!
I have hit a bit of a roadblock. I was supposed to start Herceptin and Taxol this week but I went in for bloodwork and my neutrophil count was 0.7 then the next day 0.45 or something hella low. It's like every time I'm all ready and super game to get another chemo over with my counts are low! There was a bit of back and forth - they said I could do Herceptin but my oncologist stepped in and said no - wait a week. The pricey Neupogen did not work. Can we get $1,000 back Amgen???
I'm trying not to get sick (2 kids in daycare = germ incubators) - successful so far...
My hair is growing back in weird patchy patches. some is short and fell out some is maybe 1/2 inch? feel like a fuzzy duckling. I never wear my wigs. Just been beanie/toque-ing it.
Some crazy stuff is happening at work and I feel like I need to be there. 2 key retirements, including my boss. Also thinking - should I apply for his job? then I think - hell no - stress city is not what I need. I just do not like being absent when chess pieces are being moved around and I need to be on top of my game/figure out what is happening!
As for TV and media - I recall the week I found out I had cancer I was watching Nashville (don't judge. It's mindless and that Connie Britton has beautiful hair lol) and one character was dealing with cancer and not telling people. I was watching this and was a total mess. Also October being BC awareness bonanza - every magazine had many articles on breast cancer and ribbon this and pink that. Buy this pink eye shadow palette. One cent goes toward Breast Cancer cause. (Note: my public library card lets me access Zinio - which is a online magazine service where I can download hundreds of magazines for free.)
I'm kind of rambling here. Hope everyone is feeling ok today!
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