Mamas Surviving Cancer... NEW THREAD -May - Page 3

[delphinus]

I'm sooooo happy you're going to be done with chemo Traci! Yippeee!!! Even though I'm just starting it makes me feel like there's light at the end of the tunnel!

I have a couple of hair questions mamas....I'm planning on shaving my head on monday which will be day 10 after my first AC treatment. It probably won't have started to fall out by then, but it's a full moon and I have always tried to cut my hair on a waxing moon (my man has first nations heritage and introduced me to this Ojibway (& many others cultures I believe) custom. So I've heard conflicting info, some say clip and then shave with a man's electric razor, others say just clip short, so the stubble can fall out and the follicles won't get trapped. What did you guys do?

I did get a wig, I wasn't going to but the insurance covered it so I thought why not. I ended up getting a pretty short funky style, even though my hair is long now. I wanted to go even blonder than my highlighted hair (to match my beautiful boys' hair!) but all the long blond wigs made me look like Garth from Wayne's World! Yeah!

Better go, I just remembered I forgot to give myself the neupogen shot! it's been going fine by the way. my man was giving them at first, but I'm o.k. with jabbing myself now, I do it it my stomach and it does hurt less if I squeeze it in slowly...

love to all and hi Celeste!
Janet

[Still_Snarky]

: Hi Janet!

[EFmom]

Janet, I had my dh buzz my head with a clipper. It left about an 1/8 of stubble. About half of the stubble fell out and the other half is still there, without any signs of falling out. I never had any problem with trapped hair follicles.

So ladies, how are your oncologist's offices?

I have to admit, I am blown away by mine. I have never been a fan of the medical profession. My surgeon referred me to this particular doctor, and I was dismayed to find out that they are part of a big corporation, US Oncology. I was all set to ask for a different referral before I even went the first time because of the corporate connection.

However, in all my 46 years, I've never encountered an office like this. Patients are treated cheerfully and respectfully. The receptionists are nice and helpful, totally without the gatekeeper mentality. The phlebotomists are skillful, cheerful and sweet. I'm on the same schedule as one patient who hates blood draws to the point of tears, and I've seen one of the phlebotomists hug her, dry her tears, tell her jokes and hold her hand. My doc's case management RN goes way above and beyond if you have a problem. She stayed late on a Friday afternoon because I'm getting mouth sores and she wanted to make sure I got medication for the weekend. She calls after every chemo to see how things are going. The nurse who runs the chemo suit is an absolute joy and if anybody is going to pump me full of toxic waste, I want it to be her!

My doc is terrific. He is on top of all the new research and he is also completely on top of his patient's conditions. He calls back right away if you have a problem. What really gets to me are the human touches that are usually absent from the medical world in my experience. He shakes hands, he offers a hand to help you up after the exam, he thinks about things like him having cold hands, etc. He also encourages questions and patient research and isn't in the least bit threatened by it.

So, is this the norm for oncologists or did I just luck out?

[auntieM]

Originally Posted by EFmom

So, is this the norm for oncologists or did I just luck out?

This has been my experience with all of the medical professionals I have dealt with, excluding one person at the breastfeeding support center affiliated with my hospital. Everyone has been pleasant, supportive & responsive. The surgeon who diagnosed me even gave me his home phone number. I have been amazed & touched by how lovely everyone has been. I am so grateful for them all.

[myrrhmaid]

Originally Posted by solange

I will be putting her back to breast in 2 weeks

That is so great to hear! I am holding out on hope that dd won't forget how to nurse and will want to try to again after treatment. 2 weeks after chemo is what they are saying about then being able to re-introduce? that's so great!
I am going to be getting a port. The last blood draw was very sluggish and she said I have scar tissue. So now I'm anxious about that but he said they will knock me out for it. So if anyone has any good advice suggestions on this i appreciate hearing it.

I cut my hair shoulder length about day 10 1st round chemo. then it all started to really fall out so i got it buzzed. It's still falling out but i wear a bandana or sarong. I just want it all gone now. My head hurts-i can feel when the pores open-it's freaky.
janet-i wish i was brave enough to give myself a shot! I can't get over that one right now-and dh is getting better and better at it. I wonder if i can use the port for the neupogen shot or it has to go in the muscle, huh? Hmm..

[delphinus]

hi! myrrhmaid the port insertion was not too bad at all, they give you a twilight drug cocktail, which unfortunately sounds way more exciting than it actually was. I think it was valium and some other stuff, so it wasn't excactly alice in wonderland but I didn't feel any pain whatsoever and was just kind of nodding in and out during surgery. It was pretty sore the first evening, I ended up taking a pain killer, but was fine the next day.

Unfortunately you can't use the port for the neupogen shots, they have to be sub-cutaneous, but for the chemo it's great, no need to keep looking for veins, just a little poke and it's done. What size needles do you have for the neopogen shots? The syringes they had at the pharmacy here came with 25G 5/8", but the pharmacist said they would hurt too much, so he gave me a bunch of 27G 1/2" to use instead, they're really tiny and don't hurt too much at all.

thanks for the hair advice, it sounds like I should maybe leave about an 1/8 inch, I'm going to go buy some clippers. I'm going to let my 3 3/4 old ds and his cousins cut it off then I'll get my dh to buzz it. Fun fun fun!

better go get ready, we're going up to my brother's place in the country overnight, monday's a holiday here, Victoria Day, and we're going to have fireworks!!

big hugs everyone!! janet

[Solange]

:
Well, chemo kicked me in the butt again..lo my last treatment, it puts me in the hospital all weekend from throwing up and dehydration....

BUT I went and got my last bone crusher shot yesterday so feeling some pain today...not feelings so chemo'd out...but still not feeling 100%. Thought this one would be a breeze since the last went so smooth....yeee-ah....

The surgery of the port was not an issue for me at all but the port has not been a fun experience...,the nurses always said how nice it was for them but not for me..... I have had a super smell sensitivity thanks to the chemo now...like when you are pg....and the saline and harpin flushes made me barf everytime they flushed my port due to me smelling it and tasting the two lovely fluids. Also very sensitive to the smell of the alcohol swabbing of the port too....

myrrhmaid-have you got to listen to the Close to the Bone tapes yet?

EFmom..my oncologist office... Doc is very compassionate tho I think he has waaay many patients as sometimes he tells me things that contridicts things he told me previously, like he forgets what he told me before...: but anytime I have gotten sick in the office right after chemo he is there telling chemo nurses to get me this or that and he rubs my hand...he makes a real fuss...
The staff is ok one chemo nurse is awesome very compassionate, the other is ok and then there is one who is just a little stone face.


I gtg dd needs me
bbl

[delphinus]

Traci, you are sooooo brave. It's so terrible what you've had to endure, but so incredible to see your positive attitude shine through, you are a very amazing woman!

I keep forgetting to mention that I also got my hands on Close to the Bone, I ordered the book from the library and have been reading the parts on visualization. Thank you so much for recommending it!

It's my last day of neupogen before my 2nd round of chemo on friday. I started to feel some lower back and hip aches on sunday and yesterday, but not super terrible yet. maybe it's better to take little doses everyday like this instead of the high dose one that lasts 2 weeks?

Doctors and hospital staff have all been really incredible here even though Canada's health care system is quite stressed. Surgeon was fantastic, Onc is super smart, a bit of an egomaniac but I'm trying to deal with that side of him. Chemo nurses are fabulous, I had been told by several people to ask for a particular male nurse and he is hilarious. Also my man and I are seeing a an onc psychiatrist who is absolutely incredible--he's probably in his late forties, brilliant, funny, we all sit around this wooden coffee table, he puts his feet up and swears a lot, it's so relaxed and he is helping us so much. It's been such a great experience seeing him. It sure is nice to not have to worry about paying for stuff (although it's not exactly free--we pay big time taxes here!)

I have a cold that I had before my first chemo that hasn't gone away completely and I'm feeling a bit worse today. I hope I'll be able to shake it, think it might be pingponging around the family. have any of you had colds that were hard to get rid of?

Better run, thinking of you all!!!!!

love janet

[EFmom]

I'm having a rough morning. At 5 a.m. dh was in the shower and I was awakened to a crashing sound and whimpering. Our 13 yo dalmatian fell down the stairs and couldn't get up. Dh took her to the emergency vet, where they did an x-ray and discovered that she had what looked to be fairly advanced cancer of her spleen, which looked to have spread. Dh had to have her put down. Poor Dottie. She was old, and starting to lose her vision and hearing, and was getting stiff, but I was really hoping she'd live until my treatment was over.

I didn't want to have to deal with it with the kids this morning right before they had to go to school. We will have to tell them tonight. I'm not going to use the C-word as it will make my 7 yo positive that I will die, too. I am not looking forward to this--they will be so upset and I know that it will raise all sorts of insecurities about me as well.

[delphinus]

Also, I keep meaning to ask you guys how much help you've needed with your kids. I'm worried about being able to take care of them later on as things get worse with the chemo, especially the baby. My dh is working part-time from home but has to return beginning of august. (It's hard even now with him helping so much and me not feeling too bad yet!) My brother, sis-in-law and cousins have offered to help us out financially with getting someone to help. I'm thinking just part-time?

I don't know, I have mixed feelings, my kids have never even had a babysitter! Ds goes to playschool a couple of hours 3x a week but it's ending soon. he just loves to play all the time, I don't know if I'll have the energy if things get bad. My parents try to help but they're not exactly spry, and dh's parents live out of town. We're meeting with someone today who sounds really fun and has a pretty flexible schedule. I guess I should get things lined up, it is such a generous offer but it makes me sad to think that I'm going to need help. Maybe though it would allow me to save up energy to have better quality fun time with them rather than just dragging myself around all the time?

What have you mamas experienced?

love janet

oh yeah, by the way, the kids cut my hair yesterday and then dh gave me a mohawk. feeling kinda empowered!

[delphinus]

EFmom I'm so sorry about Dottie!!!!! I think I must have been typing when you posted. How terrible! We lost our 16-year-old 23-toed superstar cat last november and I was devastated. It is so hard losing a pet, they are so much part of the family.

Much love,
janet

[auntieM]

EFMom, I'm so sad about the loss of your dear pup. Our pets are such a blessing & important part of our families.

Traci--yeah, you're done!! I hope that you start feeling better soon.

Janet, I totally understand what you're saying about needing help. Up until recently, dd has only been cared for by me, dh & my mom. It's also hard, because it can be difficult to guess how much help one will actually need. On the other hand, it is good for our children to have the focused attention of someone who has the energy to care for them. Letting that person be someone else for a while will help us to assure that it can be us at other times by giving us the rest that we need.

The wbc booster has not given me too much trouble. I do experience some discomfort in my hips & back, but it has not been overwhelming. I am very grateful for that.

Well, round 5 tomorrow. I will be starting paclitaxel. I am anxious to see how I respond to it & nervous about the possible side effects. I am hoping for less than 4 sticks this time.

Comfort, joy, healing & love to you all.

[Solange]

:..gosh sorry about my last post : I feel like I was not very uplifting at all...

EFmom so sorry about your furbaby....

delphinus.. I am so glad you got that book. I really cannot recommend it enough to everyone. If anyone wants to borrow my tapes please pm me and I will be glad to loan them. They are incredible and all of you mammas would benefit from them. The mowhawk is awesome!!! Feel the power!!!
Hope that cold leaves you soon..I had a cold once during this and it wasn't too bad altho my oncologists calls me in something for the sniffles and does not want me to mess around and wait it out at all on any illnesses while going thru chemo.

Caring for my children has been bittersweet. I never left ds at all with anyone until he was 3 and now poor dd has been without me( due to treatments-hospital stays ect..ykwim..) more than ds has ever and he just turned 5 today. I have seen my mother form a bond with dd that she did not get to do so young with my ds and dh has also really gotten a strong bond with dd. I get my strength from my kids and being with them has been very important to my healing. Physically, it has been a challenge more so here at the end than in the beginning with ds since he is 5 and wants to run around and do more physical play than dd. I really try to pull most my attention to dd when dh is around since I am away from her so much. Dh has been off almost this whole month to help (yes we are reeeaaly poor now) my mom works FT and cannot always be here or be off since she supports herself. You really have to do what you need to do to get healthy and your body needs to rest when you are tired. We do not have much of a choice now of being so strict to our AP ways when the blasted *c* has entered our lives, but our AP foundation of love and responsiveness is definitley to our advantage mammas in being able to deal with our children while we are sick.

AuntieM take care with this treatment today...visualize it being how yoy want it to be and do not focus on possible side effects...just think you have made it through this many and you are doing great!

I have to go...it took me over 2 hours just to get this posted..type a little play ...do this that....

it looks like a sunny day today here finally...the sun is my element...I have to get out and soak up the fresh air and warmth...it will make me feel 1000x better.....

[deb215]

double post

[deb215]

Hi all

first I wanted to give you all a for the support and strength you have here.

I would like some advice/info if you dont mind -
I just found out that my aunt has Multiple Myeloma/ blood plasma cancer and will be going through chemo/radiation treatment very soon.

I am thinking of putting together a care basket for her and would like some sugestions on items to include that you found helpfull/usefull.

I was thinking of scented soaps, oils, lotions. maybe a head scarf or a soft cap, book, music cd, etc.

what scent did you find the most helpfull/soothing?
any book or music recomendations that you found insperational?
foods/snacks that helped?
homeopathy, teas, herbs, vitamins or other alternative care?
any other sugestions?

TIA

[delphinus]

hi deb, sorry about your aunt's diagnosis, what a great idea to put together a care basket. I've only just started chemo so I'm not sure yet exactly what things are going to be most useful but a friend who has recently been through this ordeal brought some things to me that she found indespensible.

-moisturizing cream, something high quality--in terms of scent you may want to go unscented or something really mild, as chemo can cause nausea and sensitivity to smells
-over-the-counter stuff for constipation and heartburn (actually you might just want to tell her to ask her doctor what she should have on hand to treat these side effects asw they arise, as I'm not sure if there are medications contraindicated for her condition)
-baking soda for mouth rinses if she gets mouth sores
-sunscreen (hypo-allergetic)
-some nail moisturizer with little white cotton gloves that you can get at the drugstore (haven't had to use this yet but apparently nails can get very dry and cracked)
-maybe some nice makeup to make her feel better if she wears makeup, Mac stuff is nice, maybe an eyebrow pencil (eyebrows can fall out near the end of chemo apparently), some lipstick
-magazines, also that book Close to the Bone by Bolen that Solange recommended
-a little cap is great for house and sleeping make sure it is soft cotton. do you have a shop near you that specializes in head gear/hats /wigs etc. for people undergoing chemo? they might have good products
-my man just got me a belated mother's day gift (they were out of stock) an iPod mini with all my favourite music!!!! I'm so excited!!!! --maybe a bit of an extravagant gift for your aunt, but the Shuffle's only $99!
-a popsicle maker for making healthy juice popsicles when appetite's low or mouth is sore, IKEA has them for 99 cents
-organic ginger snap cookies
-my herbalist made me a basic blend of astragalus, ginger root, licorice root, and cassia bark, but if you have a good herbalist near you you might want to ask about something specific for her condition but mention that she will be doing chemo/radiation, although some people might not want to do alternative things while undergoing conventional treatment, so it's best to know her feelings on this
-I've been drinking lots of organic green tea

anyway, just some ideas, I'll let you know if I can think of other stuff, and maybe some of the others who are further along in treatment will have a better idea of what has really helped....

hi everyone! big hugs!

[auntieM]

Hi, Deb. Hugs to you and your aunt!

Here are some more ideas:

-I have enjoyeded mint tea and candied ginger. I'm a chocolate fiend & someone sent me a some chocolate goodies that really lifted my spirits.

-General thinking of you pick me up notes in the mail.

-Things to make her laugh..funny movies, comics, LOL Janet Evanovich books...

-Cut flowers

-meals

-Several of my family members have sent me beautiful little angel figurines. I also got the happiness figurine that is just delightfull. http://www.demdaco.com/cgi-bin/demda...gel+Collection

-I second hand/foot/cuticle cream

-If you have the kind of relationship that will allow you to do this & are close in proximity a little vacuuming goes a long way.

-Microwaveable heating pad. This has been helpful for the minor bone pain I've experienced & for some mild pain at my infusion site.

When my treatment first began, I was reluctant to accept help because I still felt pretty good & I didn't want to put anybody out. I have since learned that I need the help & that it is therapeutic for my loved ones to be able to give it. I had two groups of friends offer to bring me meals--one at the start of my treatment, & one a little bit into it. I reluctantly agreed to accept meals from the first group on chemo days. The second group simply told me, "we will be bringing you meals every other day in May."

She may need rides to appointments. She may need grocery delivery.

I haven't done this yet, but plan to. I'm told that they have lots of good advice & nice freebies--http://www.lookgoodfeelbetter.org/

Ask her what she needs & recognize that she might be a little reluctant at first to accept help. I hope that this is helpful to you.

[auntieM]

Traci, please don't worry about being uplifting. We are here for you no matter what your mood is! It has also been my experience that DH & my mom have been able to form closer bonds to dd. It is one of the many blessings that I have been able to find in this experience.

Treatment yesterday was a mixed experience. No nausea to speak of. WooHoo. The down side was pain at my infusion site that was disconcerting to me. I got up for a bit & blood flowed out of my hand into the line. It rested there for a while & formed a clot that she had to flush. Yikes! That was not pleasant. On another positive note, they got me w/ one stick!!! Before I went in, I filled the bathroom sink with warm water & dunked my hands in it for several minutes. I said a little prayer while I waited. The nurse used a slightly larger needle that helped her to get through my tough skin.

Traci, I'm doing my best not to anticipate/focus on possible side affects. I think that's great advice.

Janet, cool hair cut. I am kind of enjoying my bald head. I get lots of comments from people who tell me that it is very stunning/striking (lipstick helps). Plus, it is soooo easy to take care of. I don't plan to keep it this way when I have a choice, but for now it will do.

Comfort, healing, joy & love!!!!

[Solange]

Deb ..just wanted to say to ITA with all the other two have posted...hard to choose which I would recommend first...amybe the chocolate...lol...

AuntieM....so do you not have a port? Is that what I am understanding from your post? The whole vein thing did not sound fun...so sorry for that....

so today I had my first stranger question about my illness. I go out with just my bandanas on my head and today the check out girl at my local grocer asked me if I was sick and pointed to my head...I was kinda taken off by it..and my mouth just said "well, yes.." and she proceeded to tewll me that she had ovarian *c* 11 years ago and had to go thru chemo....kinda weird...not sure how to take it...I guess I do not really feel like just because I have no hair I look that different from everyone else...guess a bald woman cannot really fade away into the crowd...lol...

gtg..bedtime...

[Solange]

oh..and can I just apologize now for all my typos...since my chem o it has been so bad and it is so hard to keep going back and doing a spell check....so sorry!!!..LOL