You may have noticed that I have added a bunch of website links to my blog. You should really take a few minutes and look through them. I only add websites that I find helpful, inspirational or educational.
It has been a year since I stopped treatment. Unfortunately I didn't reach out to anyone until just recently. I knew about the American Cancer Society, National Cervical Cancer Coalition and other various support groups but I chose not to participate, BIG MISTAKE. Just the other day another fighter told me about all sorts of charitable organizations that could really help me out. I have surgery every three months and have to fly from FL to Mass., this adds up. To my surprise there are a bunch of charities that will help pay for my tickets, O-M-G how great is that! So, today I called the ACS and got an ID number and started signing myself up for all sorts of charitable organizations. Flights, places to stay, excursions, magazines, WOW there is so much out there!!
So I strongly suggest to those of you who have been going it alone, give in and take some help!! Please take a minute to look through the websites I have linked, who knows you may really enjoy them and they could help make your life a little easier.
If there are websites you think I should add just let me know, I would be happy to include them. Also, the sites are not dedicated to any specific cancer. Please check em out and let me know what you think.
Arranges free transportation on commercial airlines
Requires 14 day notice
2. Miracle Flight
Transportation on private crafts like Angel Flight
Requires 10 business day notice
3. Corporate Angel
transportation on private corporate jets
Requires 1 week notice
4. Continental Care Force
tansportation on private crafts like Angel Flight
Requires 2 weeks notice
5. Midwest Airlines
Miracle Miles Program
Free commercial tickets on Midwest through their gift of miles
Requires 10 day notice
Free gift of commercial airline ticket
30 days notice
Reduced fare coupon books for Clinical Trial patients
There are two kinds of battle wounds, that I know of. There are the wounds we wear on our skin for the whole world to see. And then there are the hidden wounds, the scars that are on the inside. It is the second type of battle wounds I am going to discuss in this post.
Unless you have experienced Cancer there is absolutely no way you can see the hidden battle wounds that it inflicts on its victims. One may be able to see its outlines in the form of a loved ones tears, anger or frustration but that is just the surface. I think these hidden battle wounds have caused the majority of my suffering. Cancer ripped its way through my life reeking havoc on my body and mind. At first my only focus was on my outer wounds. I was so self conscious of visible battle wounds, scars, radiation tattoos, sunken in eyes, blisters, radiation burn etc…I, along with my doctors, worked hard to heal all of these wounds. I was given medication, lotions, food etc…As time went on these wounds healed and I began a long journey of recovery.
It was after my treatments ended that I began to notice the other battle wounds. I had no idea what to expect, why I was feeling the way I was or how to deal with it. This is the moment I began to feel totally and utterly alone. Was I the only person who felt this way? Was I going to go the rest of my life holding onto these wounds, separating myself from the rest of the world more and more each year? Talking to family and friends just made my wounds grow deeper.
People tried to relate, listen and provide me with what I needed but that was impossible. They didn’t have cancer; they couldn’t see what it had done to me beneath my exterior. I am speaking both physical and emotional. The hidden physical wounds were many. Friends and family could only understand what they were seeing, “you look good”. I can’t tell you how many times I heard that, as if by saying it somehow they would make it true. I did NOT feel good. The radiation had burned my organs. Digesting food was horribly painful, making me afraid to eat. I had to pee almost constantly and every time I did the pain was, and still is, blinding. Every time I had sex it was/is painful and I bled. For a long period of time I had no taste buds or sense of when I was suppose to be full or hungry. My vision was blurry, I suffer from hot flashes, cramping, bleeding and anxiety. These are only a few of the hidden physical wounds Cancer left me with.
There are also the hidden emotional wounds. The loss of self, anxiety of the future, fear of the unknown and absolutely terrifying reality that it could come back! These are only a few of the emotional wounds I deal with every day. As I have said in earlier posts I was not dating anyone and had no kids when I got sick. Who would want to date me, never mind marry, when I couldn’t have kids? Who would want to take on the responsibility of having to help me on the bad days, and there are lots of those. And who would want to start dating someone who could get a PET scan that said they were going to go through all that again? I couldn’t imagine, not in my wildest dreams, what person would willingly take on all those things.
I have an emotional wound named GUILT. What I put my family and friends through. How much I changed their lives. My family had to sacrifice so much, they still do. Everyone around me was scared, frustrated, mad, sad, stressed, the list goes on and on. I changed all their lives so much. And I didn’t change their lives for a day, week, month or even a year. I changed them for life. I stole a piece of their innocence and there is nothing I can think of that could ever make up for what I took.
I kicked Cancer’s Ass but it also did a doozy on me! If you are a supporter please understand that just because the cancer appears to be gone it is always a part of our lives.
Cancer has helped shape the woman I am now and because of that it will always be a part of my life. My wounds may begin to heal but they will never be totally gone. We need you to not forget, not try to pretend like it never happened and to accept that while we may look good there are still daily battles we fight.
I've decided to have a guest poster once a week. While I started this blog to share my story my main goal was to raise awareness. I have met so many wonderful fighters and survivors since I started my blog. There are so many stories out there that need to be told and heard. Here is the first story provided by a brave, strong & inspirational woman, we will call her "H". Please take the time to read her story and comment if you can. I would like to add that this story is very similar to mine and scary as hell. If you are a woman you MUST READ THIS.
I was diagnosed with Cervical cancer in Feb of 04, although I knew I was sick for about a year before that. I had been just feeling general malaise and yucky. I had started up a relationship with “S”, as I will refer to him on here, about 2 months prior to not feeling well but my symptoms started way before that, I just didn’t know what they were.
In March of 03 I was living with someone and our relationship was not the greatest, it was on the way out. On one of the nights that we got along (there weren’t many at this point) we had sex. Afterwards I got up to go to the bathroom and to my dismay there was blood all over the bed. When I say all over, I mean ALL over. I honestly thought I was having a miscarriage. I called my GYN on Monday and he was out of town so his partner saw me. I went in and he did a pelvic exam, told me I wasn’t pregnant nor had I been, and that the inside of my cervix is like the inside of your nose and sometimes it will bleed. He put silver nitrate on me and told me not to have intercourse until I saw my regular GYN in 10 days. What a relief! I went to my follow up appt and my GYN said everything looked normal and to resume normal activities.
My normal activities included leaving the jerk that I was with and moving to my own apartment. In the meantime I was just not feeling myself – tired, lethargic, no appetite and just plain crappy. I was having a little spotting but nothing I felt was too out of the ordinary. I had gone out with my girlfriends one night that I was feeling better and met “S”. A great guy who I had a lot in common with. We started dating exclusively around June of 03. All was well until we started having a sexual relationship. (I hope that my blog is not too graphic for anyone I just want everyone to know the signs to look for) The first time we had sex I bled again. Bright red blood all over and this time it hurt. Talk about embarassing :( How do you explain that to someone? He was very understanding but at the same time I became very self concious and felt that we had to “prepare” everytime in case I would bleed.
I went back to my GYN not long after the first time “S” and I had sex because not only did I bleed and have pain but now I had a horrible yeast infection! He saw me, diagnosed me with a Gardnerella infection (yeast) and a bacterial infection put me on Diflucan and Metro gel and sent me on my way. Still NOT addressing the bleeding. Meanwhile I still feel like crap and the pain during intercourse is getting worse. I remember one time going into the bathroom afterwards and passing out on the floor. He found me like that. I decided not to go back to the GYN I had been seeing and go to my family MD instead. Maybe he could help me! I still had this yeast infection and was just plain miserable, all the while trying to keep my chin up and be my normal self and have this new relationship with “S”. My MD told me I had a yeast infection (no shit) and put me on more Diflucan. I dealt with this for about another week or so. I also made an appointment to see a different GYN that a friend referred me to. He HAD to have some answers!
I will remember this next day that I wil explain to you in vivid detail. I remember it so well because I have never wanted to commit suicide before but I thought about it more than once on this day. I had this ongoing yeast infection now for over a month. I stayed at my sisters house the night before(thank god for small favors) and that night I couldn’t sleep at all. I was in so much pain and agony from this infection that all I could do was cry. I was still on the Diflucan (my MD gave me an ongoing RX for it to take 3xs a day! Like thats normal!)and the Metro Gel and was getting no relief. I told my sister that I wanted to die. She asked me what I wanted to do and we decided to go to the ER. I knew that they wouldn’t be able to help me but I was desperate.
The ER doctor do a pelvic exam told me I had a yeast infection (really, I should be a doctor considering I told them that when I went in and had knew it for over a month) put me on a different kind of medicine for yeast infections and sent me home. The medicine he gave me gave a little relief but I was still not up to par.
I had my first GYN appointment with my new GYN and told him about all of the things that had been happening to me. He did a pap (which came back normal) and told me to discontinue condom use (wtf??) because it was causing me to have “rubber burn” (seriously people these are his words NOT mine). I told “S” and boy was he happy to hear that! Can you imagine?? Doctors orders! This GYN noted on my chart that my cervix was “friable” which basically means in laymens terms that if you touch it pieces of it will fall off. Yuck! So we quit using condoms. Nothing changed though. It is now around Dec-Jan of 04. “S” and I had moved in together and were trying to start a life together, or so I thought. At this point there wasn’t a time where we would have sex that it didn’t just about kill me. I was actually trying to get away from him during it and would end up crying, not to mention that the bleeding was worse.
I went back to my GYN in the beginning of Feb, he did another pap (again negative) and he told me that I needed a laser cauterization of the spot on my cervix that wouldn t stop bleeding and hurting me. At this point in time I knew EXACTLY where my tumor was I just didn’t know that it was a tumor. He told me that this wasn’t something that would “kill me” (again his words, bet he wishes he wouldn’t have said that now) but if I wanted to stop bleeding and having pain during intercourse then I should have it done. I decided to go ahead with the procedure, but before he took the speculum out I asked if I could look inside. He gave me a cute little mirror that bent down so I could see inside of my vagina. What I saw I will never in a milloin years forget. Your cervix should look like a cute shiny pink doughnut….mine (if you think of the face of a clock) was black from 3 to 9. BLACK. I have never seen anything so gross ever. I excaimed this to him and he said it was dried blood. Huh… really?? I now know what cervical cancer looks like.
I go to have the laser procedure done and am very nervous considering I had never even had a stitch. All goes well (or so I think) and while I am in recovery my GYN tells me that he felt that something looked “funny” in there and he did a cone biopsy instead. He also told me not to worry. So I didn’t. I had the procedure done on Friday and was told to call for my results on Tuesday.
Tuesday afternoon I was at work and called my G YN’s office. His receptionist told me to hold on while she got my results. This was weird right away for me because she never did this. She always just read them to me from my chart.( I am only telling you about the GYN appts that I had that are meaningful to this story. I actually had 12 negative pap smears in the year before I was dignosed. This is why I know that it was weird for her to put me on hold.) She comes back and tells me that the GYN would like me to come in and talk to him. I knew right then. I asked her if I should bring someone with me to my appointment. She said “Yes honey, you should.”
I called my mom and told her she needed to come to the GYN with me that I had cervical cancer.
We went to see him and he told me that I had squamous cell carcinoma of the cervix but that he didn’t think it was too invasive and that I should only need radiation to get better. While I was devastated and my first question to him was if it could wait until I had a baby, he reassured me and gave me a referral to a GYN Oncologist.
I saw him the next day. What a jerk! My mom, “S”, sister and I went there and he did a pelvic exam. He told me that I needed a radical hysterectomy, radiation, internal radiation, chemotherapy and that I needed it about 6 months ago. I call him a jerk because while all this was true, he had complete disregard for the fact that I had no children, was young and had just been diagnosed the day before. We were still being optimistic at this point. I asked him if I could have a child first. “Absolutely not if you want to live” is what he told me. I have always wanted children and this was a big blow for me, as if having cancer isn’t bad enough, now no kids either. I called my GYN and asked for a referral to a different GYN Oncologist and was referred to Dr Garth Phibbs. He is amazing.
I saw Dr. Phibbs and while he told me all the same things as the first guy he was very knid and concerned and told me that I had had this cancer for a long time. Again, no shit. On March 19, 2004, I had a radical hysterctomy and he moved my ovaries up after biopsying them in case I did need the radiation treatments.
I had Stage 2 B Squamous cell carcinoma of the cervix, ueterus and the tissue surrounding and it was in one of my pelvic lymph nodes. The radiation would be needed after all. Dr Phibbs gave me a little time after my 6 weeks of healing to go the the University of Indiana and have in-vitro surgery. I have 4 eggs frozen there :). This gives me some hope that someday I can still have a child of my own.
I had 5 weeks of external radiation, 6 chemotherapy treatments with Cisplatin and 3 internal radiation treatments which it was those three things that cause me all the problem s that I endure now. I swear that if I would’ve just had that hysterectomy I would feel fine today! Those treatments have caused me to have menopause at 29, vaginal dryness and worst of all vaginal stenosis. I have to use a dialator (or have intercourse but since I am single…) 2-3 times a week and it hurts so bad that sometimes I can hardly walk the next day. I have to do this for the rest of my life or the opening to my vagina will close forever. It’s not fun.
All through my surgery “S” was there for me, he stayed in the hospital with me, went to my treatments with me and was my rock. I still love him for that. I found out about a year after all of this happened to me, that the whole time I was sick he was trying to date someone else and telling her that “my girlfriend is sick but as soon as she gets better I will leave her for you”. Saying this to her and staying in the hospital with me. ASS. Needless to say, that was it for me. I couldn’t get over the fact that if he would do something like that to someone he loved when they needed him the most that he would do anything. I made him move out and have been pretty single ever since.
I have dated but cancer is a hard subject to explain to people (especially men) and the fact that I cannot have children makes it even worse. I have told some, never to hear from them again. Others are fine with it until we try to have a “normal” sex life because for me that is non-existant. I am okay being alone for now though, I figure that if he can’t handle it then he isn’t worth my time anyways.
Present day- I am 33 now, and am feeling pretty good physically (minus the vaginal issues, hot flashes and night sweats :P) and am working full time as a dental assistant and have even gone back to college! I think I might make it after all!
I already told you about my first tattoo given to me by the girls at Radiation. If you don’t know about that you need to read my older post, My Very First Tattoo…not what I expected. Before the BIG C came into my life I was sure I would never ever get a tattoo. I didn’t have any moral objections to tattoos but they just weren’t for me. As I told you before I was given four tattoos, very small dots but tattoos none the less, in order to have my radiation.
When I finished my treatments I spent some time in
After a lot of thought I decided I was going to write into the television show Miami Ink. I felt like I needed to do something with my new life and getting a tattoo seemed perfect. The Old Meaghan would never have gotten a tattoo. She was afraid of needles, afraid of permanency and concerned about what others would think. The old Meaghan was gone though. No matter what I did I could never get her back, Cancer took her. Who was the NEW Meaghan? This I could not tell you but I knew I needed to start figuring it out. I thought this was the perfect place to start.
I decided that if Miami Ink didn’t respond to my letter I wouldn’t get the tattoo. I figured going on the show would be the perfect way to share my story with the world! My second thought was, this tattoo will be on my body for the rest of my life so it better be good!! I got the call about two weeks after I wrote in. The producers loved my story and ask if I would be willing to drive to their office and do an interview to make sure they wanted me.
Well I said yes, of course. I drove down to
I got a call an hour later, “well do it”. So that is how I got onto Miami Ink. The story about my experience filming the show is for another post but I will say it changed my life. The tattoo and the experience truly marked the birth of the new Meaghan. And, I love the NEW Meaghan! Sometimes I miss the Old Meaghan but I have those memories and will cherish them forever. New Meaghan, welcome to the world and start kicking butt!!If you want to watch my episode you can purchase it off of I-Tunes for 1.99. I am in the second episode of season six. Sorry I don't have a Youtube of the episode, I'm not computer savvy enough to figure out how to do it :(
I got a lot of great feedback about my last post. I decided do a part 2 and add some suggestions from other survivors. Again, if you have additions please comment or email. There are many people out there who want and need to know how to support a loved one. Lets help our fellow fighters by telling the world what makes us smile, feel happy or even feel bad! How are others suppose to know if we don't tell them!
Say "I'm coming over with (books/magazines/food/plants whatever) and I can drop it off or come in and visit if you're up to it." Outside of a very few people, "Let me know if you need anything" is a well meaning but empty offer. There aren't many people outside of family that you can ask to make you a meal, do the dishes, or take over care giving while you nap. But if you just show up and do it while simultaneously letting on that the ball is in their court -- well, that rocks!
Offer to make meals and drop them off at your Fighters home. When someone is fighting cancer the last thing they can do is cook. If they are lucky enough to have a caregiver that person is usually exhausted as well and it would mean the world to them if you could contribute some yummy meals. I included a site that has recipes :)
Offer to take the patient to appointments and/or sit with him/her during chemo treatment. A fighter should never have to go to treatment alone. These treatments can take up to 8 hours, I know mine did! When you're there you can read to them, watch tv with them, chat or just support them in silence.
Listen attentively with saucer eyes and don't try and interject with your own story. Don't feel you need to make sense of it for us with a grand philosophical observation. It doesn't make any fucking sense. Many many many Cancer Patients are the kindest, bravest, purest souls we have ever known. So, why did they get cancer? We're in no mood to puzzle it out with you.
Put surgery days and check up days on your calendar and then magically know about it and call and offer encouragement. We just LOVE that.
Send cards and emails often. Big expensive gifts were not necessary. Some Cancer patients hate flowers so find out how your loved one feels about them.
Remember the caregiver -- they need strength too.Many care givers stay in the hospital for days or weeks and sleep in chairs or on little couches next to their loved one. Be a good friend and if you can take the caregiver to breakfast, lunch or dinner near the hospital. This gives the caregiver a chance to talk, eat a nice meal and have a couple of good stiff drinks to get them through a tough time.
Leave your judgments at home. People with cancer have the absolute right to lash out and be nasty now and again. Pain, chemo and anesthesia will do things to a person. But still, it hurts! It shouldn't be too shocking if a caregiver needs to vent. Let them get it off their chests so they can get back in there and keep going. Cancer isn't like day to day life. It's ugly and beautiful and it brings out the absolute worst and best in people in shifts.
General Gift Ideas from my readers!
Netflix Membership. Meg's mom paid for a membership to netflix every month while i she was sick- So she didn't have to get up and go to blockbuster to see new movies!!
ITUNES Gift Card. Meg was was home so much and was downloading all types of music.. for her ipod to listen to at treatments!!
Humor Books. Get your friend funny books to read or have read to them. Often I had surgery at least 1 time a week or up to 3 times a week. My friend Laura bought several books that had quick funny entries and my father would read them to me while I waited to be put under General Anesthesia.
There is a great site one of my readers shared with me that has TONS of cool gifts for the cancer fighter in your life! Cancer Apparel, Cancer books & CDs, Buttons, Gift Baskets, Assorted gifts, Jewelry, Cancer Sucks stuff, Wrist Bands, Caregiver gifts, New Cancer Products, Treatment Days Thanks Stacey!
Cool Swag for Knitting Freaks!! Us fighters get bored laying around all the time. If your fighter knits this site was recommended by another survivor. Totally Awesome stuff for everyone who knits.
Knit them something. If you can knit this is a great gift! Terri's friend made her one of these and she loved it.
ths girl donates 100% all net profits to th LLS!
this is a grate place to send flowers, and you can choose from tons of charity's to donate 10% of your total cost!
Tutti Fruity Designs
10% of every sale to the Leukemia and Lymphoma Society. Twenty percent for featured products. Cute things for little kids and their moms.
Sports Gifts for Cancer Fighters
this is a unique gift place for sports fans
Cancer Research UK Gifts
this is for our UK frends
Chillow Pillow for those whose treatment results in menopause (Thats me & it sucks!)
Gas Cards for those who have long drives to their treatment centers. It can add up b/c often treatment is every day for months upon months.
Personalized Gift Baskets
Ask us to call you and give you updates. We're a little preoccupied.
Tell us you feel left out of the process because you haven't been called with regular updates.
Grill us about why we're not pursuing alternative courses of treatment instead of traditional western medicine. You can trust that we've been doing our homework on this one. And we're both too tired for the debate.
Assume that any healthy meal will be good for the patient. If the patient is going through chemo, ask the caregiver what they can eat and follow those guidelines.
Tell us that you can relate because you once had "lasik surgery" and it was very traumatic. (a true story!)
Stay too long. If we beg you to stay, then that's another matter, but after 15 minutes offer to leave. The caregiver might be more honest than the patient.
Get too focused on coming to the hospital. Many hospital days are packed full of grueling and exhausting procedures. There maybe only a small window of time when the patient is comfortable enough to see anyone or not going through some kind of terrible ordeal. There is plenty of recovery time at home. Also, hospital stays are filled with leaking body fluids and bags that might be embarrassing to the patient.
Unless you have had cancer or been the spouse of someone with cancer, there are few comparisons that will be comforting. So be careful about cancer anecdotes! We didn't want to hear about anybody who had died, or anybody who had an easier time of it than he did. We only wanted to hear about the ones on death's door step 20 years ago who now have 10 children and a multi-national company.
NEVER EVER say "you have to be brave" to a person with cancer OR their spouse. That's just rude. We have to be brave sometimes and then other times we have to crumple up into little balls and cry and be cowards. Other times we have to be really, really fucking pissed off. Keep your stupid platitudes to yourself.
- these are all great and I am sure everyone of us can relate to at least a couple. Please pass it along so everyone knows the do's and don'ts of supporting someone through their battle.
Thank you Hayley for all these great pieces of advice! You are a strong woman and we all thank you for sharing your advice with the world!!
First let me say that I am speaking for myself in this post. All cancers are NOT the same. All cancer patients do not get the same treatment or react to treatment the same. For example, radiation was absolutely horrific for me but my mom, who had breast cancer, said radiation wasn’t that horrible (it all depends on where your radiation is). Chemo wasn’t horrible for me, still very bad just nothing compared to radiation, but for others chemo is totally debilitating. Because of this I would greatly appreciate comments that can give additional advice. This is a topic that many, many people have asked me to write about so I know people would appreciate comments that could add to my post.
To Send or Not to Send……the answer is SEND! This is a very emotional topic for me, probably the most. When I arrived at Dana Farber I started to get very sad. I was away from all my friends, in a hospital room and afraid. At first I got lots of cards, flowers, stuffed animals etc…I distinctly remember thinking to myself, “everyone is sending things now but I know in a month the cards, flowers, gifts will stop and everyone will have forgotten about me” This made me so sad. I felt as though by being absent everyone would forget about me. I WAS WRONG! During my four months of treatment I received at least one card, package or flower delivery a day. This truly was what allowed me to make it through a horrible experience. I felt so loved, missed and inspired. I fought hard against cancer because I knew I would be missed and I felt I owed it to everyone who was supporting me to fight and live!! Each card & gift brought a smile to my face, something that was rare during my treatments. The only time I felt warmth in my heart was when I opened a package or card. It had very little to do with what I got but rather the escape from focusing on cancer & the knowledge that so many people were routing for me.
Here are some gift ideas for the cancer fighter in your life(If you click on the highlighted ones it will bring you to the website where you can purchase the gift):
- Cards→ cheap, easy & so important!! I got multiple cards from the same people so don't think, I already sent a card, send another!! Home made cards are great too if you are on a tight budget.
- Food (depending on the situation. When I was in the hospital before chemo and during the very beginning my friend Laura would go to cheesecake factory and bring me food, that was great)
- Books (depends on your loved ones situation. I couldn’t read because my eye sight started to fail from all the medications I was on)
- Read books/magazines to them or get books on CD(during chemo or at the hospital but ask first because many times I felt so nauseous that I wanted to be in silence)
- Write on Caringbridge or blogs (depending on whether your loved one has one of these. Caringbridge is a program at Dana Farber but your loved one's hospital may have a similar program set up)
- Flowers (Again this depends. If your loved one is having Chemo the smell may bother them. If you're not sure call your loved one's family or friends and ask them, do not ask your loved one)
- Games ( I loved scrabble and played hours on end with visitors in the hospital and at home)
- Chapstick (many times I had chapped lips from treatments and medications)
- Pajamas (I lost so much weight nothing fit me. People sent me smaller sized pj’s that were soft and plush. Call a family member who would know what size your friend is now, probably a small!)
- Angel statue (This was one of my favorite gifts given to me by my aunt. I linked this so you can click on Angel Statue to get to the site)
- Pillows (I got a plush heart pillow and took it to chemo treatments with me every Friday. It was nice to have something soft to lay my head on, treatments make you very sleepy!)
- Blankets (Three friends sent me plush blankets and I loved them. If I got admitted to the hospital b/c I was doing bad I would bring them and feel at home. They were also great when I was at home b/c I slept all the time!)
- Stuffed animals (I don't know about other people but when I was sick I reverted back to being a kid! My stuffed animals help keep me company in hospital and during chemo)
- CDs/music (I got some CD's after my treatment was over and I was recovering. During treatment I didn't listen to music at all b/c it made me feel sick)
- DVDs (depending on your loved one. For a while I couldn't watch tv b/c that made me sick too but during recovery the CDs were great! You get bored laying in bed day after day.)
- Inspirational Jewelry (One of my best friends gave me a beautiful necklace that had a cross and heart. Then when I found out I was cancer free she got me a charm that said survivor and had a ribbon. If your loved one does not have breast cancer do not send them a pink ribbon necklace! )
- Fruit basket or Edible Arrangement (Personally I was obsessed, seriously OBSESSED, with fruit while I was sick.)
- Lotion (if your loved one is having chemo don’t give them anything that smells)
- Fancy Shmansy Water bottle (for those who have to drink all the time like I did. A cool water container could add a little brightness to their day)
- Cancer books
- Eye Masks (Treatments make you very tired! This means us Cancer Fighters sleep during the day and its super helpful to have eye masks to block out the sun. I included a link to a site that sells these masks)
- Hand Held Games. added in a comment by Joni. Joni's personal favorite was Yatzee and if you click on the link it will bring you to a site where you can buy that for your loved one.
- Slip On Slippers. Also added by Jonie. Jonie and I both totally agree that those hospital socks SUCK!
- Doing Nothing. Whatever you do DO NOT do nothing! I was very aware of what family and friends never sent cards, packages, flowers etc...It hurt! Sorry if I hurt anyone feelings by saying that but I am here to be HONEST! I noticed when someone acted as though nothing had happened to me. If you're not sure what to do I can tell you anything is better than doing nothing!
- Try to avoid calling ( So many people called me but honestly the last thing I wanted to do was talk on the phone!! I felt guilty when I didn't take calls but when I did take the call I was miserable)
- Nothing with an odor if your loved one is having chemo treatments
- Nothing that takes work/concentration (no crossword puzzles or project. Treatment drain you and its frustrating not being able to do things)
- Don’t ask them what they want maybe ask family member but don’t bother friend they don’t know what they want, they want to not have cancer.
- Don’t sit by there bed side and try and figure out why is happened, because cancer is random and cruel and can strike anyone (added in a comment by a reader)
- Joni added: "don't wait for your loved one to contact you. They aren't feeling well and won't for some time. To say 'call me when you're up to it' means you will NOT get a call."
- Jonie added: "Don't get upset when they don't answer your call. They are tired and aren't up to talking, but they do very much appreciate hearing a loved ones voice on the other end say "I'm thinking of you".
Please comment to this post with additional gift ideas & insights.
P.S. Thank you to all my family and friends who supported me I think about you everyday!
Ok folks I know a lot of my posts are tear jerker's so I thought I would share this funny one with you, at least I think its funny. About three weeks after I got to Dana Farber they let me go home. I would still have to come into the hospital every day for treatment but I could sleep in my own bed (well sorta I didn't really "live" in Mass. but it was my home for the time being).
One of my best friends flew up from Florida during her spring break to visit me. My mom had a great idea, get a nice hotel room in Cambridge (directly across the river from my hospital so we were close but it felt like a vacation). Now I should point out that the entire time I was in the hospital in Florida and then Mass. I refused to brush my hair, shower, change my clothes and I barely brushed my teeth and ya I had two pee bags that I carried around with no shame. Needless to say I look like a hot mess! My mom decided she would treat me to a day at the salon, I think this was an attempt to get my hair brushed for the first time in over a month.
We arrived at the salon, I should point out I was not feeling well, as usual. I couldn't stand up straight so I looked like a hunch back, my hair was so out of control it wasn't funny and I was about 20 pounds underweight. My poor hairdresser look horrified when she saw me. I sat in her chair and held onto my almost totally full pee bags while she started to deal with my hair. Poor thing tried to make small talk but I wasn't having it, I just sat there while she washed, cut and blew out my hair.
This woman didn't "know" I had cancer. Its like when you think someone is pregnant but you don't want to ask, just in case. So she finishes up, thank God cause all I wanted to do was crawl back into bed. Then I am brought to my next appointment in the salon, the waxing. Thankfully this woman gets the guts up to ask whats up, this is how the conversation went:
Hair Dresser: "Can I ask what exactly is wrong with you"
Me : "Cancer"
Hair Dresser: "Are you getting Chemo"
Hair Dresser: "Ummmm I don't think you want to wax your eyebrows"
Hair Dresser: "Well not only will the wax remove your hair but it will also take all your skin along with it"
Me: "Yea I think I'll pass on that"
Moral of the story, NO WAXING WITH CHEMO! Thank God she asked because I can't imagine how much that would hurt never mind how weird I would have looked!!
As I told you in earlier posts my first month at Dana Farber was a bit of a fog. I know I was given a PET scan but have absolutely no memory of it. I know I had chemo, radiation and procedures but in what order I am not totally sure. People came to visit, called, sent flowers and brought food but when and who, that I can’t say. Some things I remember clearly, some are foggy memories and other things I can’t recall no matter how hard I try.
One clear memory I have is of seeing my very first tattoo. It was almost like I woke up from a long sleep and there it was. Actually, I was laying down on the radiation machine. I had blue marker drawn all over my abdomen. Big X’s and lines, kinda like you would expect to see on a person who is getting plastic surgery. I remember asking what that was, why it was there. The radiation therapist explained it was to help them guide the machine, it showed where the radiation beam should be aimed. The therapist explained that I also had tattoos, four small dots around my waist. One tattoo below my belly button, one on each side of my hip and one on my back. This is how the machine worked. It would rotate all round my body, the radiation beam hitting each of these four tattoos.
Before these four small tattoos I had none. I never wanted a tattoo and never thought I would have one but now I had four. I know they are small and most people can’t see them or don’t notice but to me they represent four very permanent things that cancer gave me. Every time I see the one bellow my belly button I think, “That is where the tumor was”. Just recently, while showering, I noticed one of the tattoo’s on my hip. It made me sad. I can’t explain exactly why. These tattoos symbolize a difficult time in my life and the many things that were taken away from me!
Hi there friends. Just wanted to let you know about a another cancer survivor who I would really like to help out. Rachel Baumgartner Lozano is a 3 time cancer survivor who was nominated for Glamour magazine's "Woman of Your Year Contest" and is now one of the top 5 finalists!!
Surviving Cancer was difficult, scary and painful for me. Life after cancer isn't a piece of cake either, as you can see from my posts. Not only has Rachel survived cancer 3 times, starting when she was 15, but she also has done everything she can to raise awareness for cancer related causes, especially for young adult cancer. She is active in countless charities and organizations. Case is, this woman is amazing and a true inspiration. You can read more about her and her story here: I Am Obsessed With Life
Lets do something for Rachel and vote as many times as we can, its the least we can do! It would mean the world to me if everyone could vote for Rachel. Just click on the link and vote. You can vote as many times as you want.
I always appreciate everyones support!
CLICK HERE TO VOTE
As you can see I have added a new feature to my blog: Launch A Star. This is pretty cool and I hope you all take advantage of it.
The Constellation is a tribute space to honor anyone who has received a cancer diagnosis.
For a donation of $1 or more, you can add a star to the Constellation in the name of someone you love: a family member, a co-worker, a friend.
I know all of you at least know one person, ME :) Please help me Stand Up to Cancer by participating.
As always thanks for your support!
This is a post my dear friend Shakenfruit wrote. The advice she gives is dead on and I thought many of you might find it helpful. If you want to check out her blog go to www.shakenfruit.blogspot.com
If I introduced you to my friend Meaghan, you would turn to me and say very seriously: that chick is a bad ass. Then you would scheme about enticing her out for a night on the town. But along with all this Meaghan fabulousness, there are tiny bummers, for example, Meaghan's friends function largely on a need to know basis. She was like this before she was diagnosed with Stage 3 fucking B cervical cancer.
Before the cancer, if you needed to know she smoked the LSAT and was attending law school in the fall, you were told. We are all dying to be on Meaghan's 'needs to know' list. It is a small special coven of pink things, scathing intelligence and wise counsel. Some how, I have managed to weasel my way into her heart.
Meaghan is going to write a book about her diagnosis and treatment, and she asked if I, ShakenFruit, would consider contributing a small piece about being her friend throughout the ordeal. I'm not sure I have anything useful to offer, but I would love to help anyone who hates living on a 'need to know basis' in general, much less when our darling, irreverent, full-of-life friend turns into skin and bones before our eyes.
When Meaghan was finally diagnosed properly (you'll read about the HORROR of not being properly diagnosed when she writes her book) we were all in shock. The shit Meaghan went through is incomprehensible. Get that Lifetime Channel, made for TV "Fighting For My Life" special starring some bald, Z list actress out of your head, because what happened was WAY WORSE.
If your friend is anything like Meaghan, I hope these thoughts help:
Show Up. Unless you Are Asked Not To Show Up
Sometimes Meaghan was alert and awake and feeling up to having visitors, and I was just so desperate to see her and have her know how much I love her, that I would forget to be nice when I got a call that she wasn't feeling up to a visit. How Meaghan was feeling could change on a dime, and because her symptoms involved feeling very physically uncomfortable and enduring very personal side effects, sometimes she just didn't want anyone around. That's her prerogative. She's the one with cancer. I regret that I didn't suck it up sooner (like, IMMEDIATELY) and put a card in the mail, or search out something funny to send, like a Margaret Cho video.
Now is the time to lavish your friend and her family with wholesome goodies, funny cards, funny e-mailed videos (if she is feeling up to looking at a computer screen. Seriously, sometimes looking at a computer screen would make Meaghan sick, or was too much effort, or she was too tired, etc....) or just leave a message for her family sending your love and white light. If you are able to visit, bring something: a knitting project, a book, a long report you need to slog through. Sometimes the patient needs to nap, or needs to be in the bathroom for a long time. Bringing something with you shows you don't expect to be entertained.
Don't Ask a Million Fucking Questions. Or Maybe Ask a Million Fucking Questions.
Of course you want to know everything. This is your shiny darling friend. The one who got you through that hellacious relationship, saw you out the other side and (most amazing to you) DOESN'T JUDGE YOU FOR IT. You want to know everything about what she's going through, except, you can't, and honestly, unless you are her primary care provider? It's not your job.
It is your job to tell funny stories about life outside cancer, and listen to her every word, and not open your mouth before she's through. Sometimes it is your job to get her ginger ale while nausea passes. But it is not your job to understand every medical thing that is happening to her. In fact, if you can ask someone else who knows, like her primary care giver? Ask them instead, because she is fucking sick of answering everyone's questions.
Now, Meaghan received care at the most respected cancer treatment hospital in our country's questionable health care system. The best. So I had no reason to ACTUALLY be concerned about the care she received. They had it down. Cold. It was ugly and brutal and painful, but it was the best care she could receive. Your friend might not have the same luxury (if that is AT ALL the appropriate word) when it comes to her treatment.
The million questions I swallowed rose to my lips because I thought I needed to know. I didn't. But maybe you do. If you need to ask questions because the quality of your friend's care is in doubt, start by asking questions very, very gently. And don't ask your friend. She is too busy STAYING ALIVE to take copious notes and feel grateful for your interest.
Sorry no pics of the pee bags only the scars.
My life at Dana Farber was tough. I’m not sure if I should tell the entire story or if I should edit some of it out. First of all the doctors didn’t know exactly how or where they should start. My kidney was still ripped open and fluid was pouring into my gut, this was something that needed to be addressed immediately. However, because of my pain and weakness they weren’t sure I could handle the procedure. Because they didn’t know when they could do the procedure I couldn’t eat or drink for a long period of time. This had been a problem when I was at the hospital in
A catheter was put in, one of the worst things imaginable. For those of you who have never had one of these monstrous things placed in you, its one of the most painful, uncomfortable and frustrating contraptions. I had IV’s in and a catheter making it very difficult to move at all. I think a couple days after getting to Dana Farber I was brought to a prep room for surgery but after being there for a couple hours they decided I wasn’t ready for the procedure. A few days later we tried again and the nephrostomy bags were successfully placed in my kidney. As soon as I woke up I begged for them to remove the catheter but unfortunately I they refused my request and it remained for a couple more days.
The bags were in, relieving much of the pain, but bringing new complications. These bags would fill with my urine and had to be emptied several times a day and night. Tubes went from my kidney, through my back and emptied into the bag. This meant that I could not lie flat on my back without pain. I had open wounds on my back that had to be dressed and bandaged every three days. These wounds itched like crazy but obviously I was unable to scratch them. It was also very difficult to dress and change the bandages because the two tubes often pulled on each other. I had to have saline injected through the tubes into my kidney twice a day, something that caused great discomfort for me. Often I would try to pull one over on my nurse saying that they had already done it, mostly they didn’t fall for it. Doing simple things like showering now became almost impossible for me. I would have to be wrapped in cellophane so that the dressings wouldn’t get wet. Often, even after being all wrapped up, the dressings would still get wet.
This was the beginning of a very long journey for me. I had the bags put in and was undergoing radiation and chemo. Still to come was the placement of my stints and internal radiation, as well as, the effects of my chemo.
If you know something isn't right with your body yet your PAP comes back normal don't just go home and forget about it! There is now another test you can have in addition to the PAP, the HPV test. PAP test can miss pre-cancerous cells as well as cancerous cells, just look at what happened to me. The HPV test is extra sensitive and therefore less likely to miss things the PAP does. I understand that women just want good news so they can go home and be worry free but what good does that do when you should be worried. If my Cervical Cancer had been caught early on I could have avoided so much pain, could have children, not miss out on almost a year of my life etc.... Check out this article if you want to know more: PAP Plus HPV Tests
Keep talking and educating yourself!
I am a member of NCCC(National Cervical Cancer Coalition). On this site you can read survivor stories and post your responses or personal stories. Lately woman have been talking about not being able to have children. This is a subject that was difficult for me at first but that has changed. I can never have children as a result of my cancer. At this point in my life I do not know if I want children but I do know that if I decide to bring a child into my life adoption is my option. However, knowing what I know now if I could have my own children I would still adopt. Here is what I posted on NCCC:
I too can never have children due to my cancer. At age 28 I was diagnosed with Stage 3B Cervical Cancer. I had Chemo, radiation and internal radiation as well as surgeries. I was given no choice and told that there wasn't even time to save eggs in an effort to try to have a surrogate later in life. Now I am 30 and going through menapause. About two months after finding out I could never have children my younger sister got pregnant. This was a hard time for me. Now I am actually happy I cannot have children. This is a subject I have thought about a lot. What I know is that there are thousands of children in the world who are not loved. Now I have an opportunity to make a difference in the world and in a persons life, what an amazing gift. I often wonder if being afflicted with cancer happened so that I could bring love into a child's life. I do not need to see my eyes or hair or facial expressions in a baby that came from me. I think it is so much more important to care for those lost children out there who have never heard I love you or been read a story before bed. There are too many children without a good home and if I can help just one of them then all my suffering through cancer was worth it! So, to those women out there who can never have "their own biological child" don't waste too much time feeling bad about it. Your child is out there and waiting for you to take him or her home! Sometimes we are given gifts in packages we don't recognize. I believe Cancer was a gift and instead of looking at the negative I chose to look at the great things that do and will come into my life as a result of it.
As some of you know I am about to enter my last semester of law school at Nova Southeastern. I am very excited! I first got sick during the second semester of my second year. Even though I couldn’t sleep and could barely stand I kept attending classes. Law school is very important to me and I wasn’t going to let anything stand in my way. When I went to the ER and found out that I had advanced cancer and needed treatment I quickly forgot about law school. I wasn’t sure I was going to survive the big C and finishing law school was something I figured was never going to happen now.
Well here I am one year after finishing treatment. My treatments took about six months and during that time I missed my second semester of my second year. However, I returned the very next semester. My mind was a little foggy from the chemo, my stomach, bladder, digestive system etc…a little out of whack from the radiation but I was back. I finished my second semester of my second year with an increase in my GPA. Then, when my classmates that I had been with since the first day of law school were finishing there last semester of law school, I finished my first semester of my third year. Again, an increase in my GPA. Then I took one class over the summer, while I was very sick, and got an A. Now I am about to start my final chapter of law school.
Law school is something I have always wanted to do. Many people were surprised but supportive of my decision to return to law school so quickly after being diagnosed and treated for cancer. Cancer stole a lot from me, more than many people know, but I was not going to let it take being a lawyer from me. So, thank you to everyone who has supported me through this journey. I am almost there and when I accomplish this I know I can do anything!
After my horrible flying experience I arrived at
Soon after being admitted to Dana Farber I started chemo, radiation and had surgery. The doctors put in nephrostamy tubes so that my kidney could heal. I was manic at this point. Talking for hours and hours until my voice was totally gone. While being hospitalized for cancer was scary it was a lot less scary then sitting at home not knowing what was wrong with me. My father stayed with me the entire time, slept in a chair by my bed for weeks. This experience opened my eyes to who cared and how much. I was lucky to have family and friends that stood by me.
The scariest moment in my life happened during the first weeks at Dana Farber. I remember the moment happened like it was yesterday. Dr. Berkowitz looked at me with his kind eyes and said, “You always have hope”. Hope, the scariest word I have ever heard. Most people don’t think of hope as being a bad thing but instead a beautiful word. Not me. Hope meant that I could die. Hope, coming from a doctor’s mouth meant they were going to do everything they could but that might not be enough. I already knew I had cancer, that my kidney was ruptured, that I was going to have chemo but it wasn’t until my doctor told me I had hope that I became scared!
Cervical Cancer Screening Saves Lives, yet...
- 11% of United States women report that they do not have their Pap test screenings
- In the United States, About 10,000 women are diagnosed with cervical cancer each year and about 3,700 women die in the USA each year from this disease.
- Women in developing countries account for about 85 percent of both the yearly cases of cervical cancer (estimated at 473,000 cases worldwide) and the yearly deaths from cervical cancer (estimated at 253,500 deaths worldwide).
- In the majority of developing countries, cervical cancer remains the number-one cause of cancer-related deaths among women.
- A woman who does not have her three shot prevention vaccine and her regular Pap test screen and HPV test when recommended, significantly increases her chances of developing cervical cancer.
- High-Risk HPV Types are directly related to cervical cancer, yet many women are unaware of what HPV is or the relationship it has to cervical cancer.
"You are not the same person you were before you had cancer"....Well no shit! How could I be? The change is difficult for everyone. For the family, friends and the survivor. But, just because the cancer is gone doesn't mean everything is just as it was before. Do I wish this never happened to me? Yes! Do I wish I could take it all back? Yes! Am I sad and sorry for what I have had to put everyone through? You bet! But I have no control over the past and I try desperately to create a better future.
If you know someone who is a survivor give them time to heal. The cancerous cells may be gone but the physical and emotional damage runs deep! Survivors need support more than anything else. Chemo, radiation, medications, stress have and still do create drastic changes in a person physical and emotional self. I am not saying let that person get away with murder or treat you poorly but just try to be kind, gentle and understanding. I can't say how every survivor feels, because I know it is different for everyone, but I can tell you how I feel. I miss my old self, barely even remember her. I hate how dependent I am on others, how much stress my illness and recovery causes. I wish I could be like every other thirty year old worrying about having kids, getting married or starting a new job. But I am not like every other 30 year old and that is something I must accept every day. I need help though and I am not too proud to admit that. I need support, a kind word and patience. And thank you to everyone who has helped me and to those people who support other survivors! Cancer can leave a person feeling terribly lonely even when they are surrounded by people!
First I would like to thank everyone who visited my blog! It is my goal to raise awareness and I can't do that without your help. Please pass my blog along to anyone you think might find it helpful or interesting.
Second, I am sorry for not posting in a couple days. It is also my goal to post almost daily. There is so much of my story I have not shared and even more information. Eventually my story will catch up to present time and that is when I will be asking for your advice and recommendations. For those of you who are not close to me I should tell you that while I am cancer free I am far from healthy. There is a long journey ahead and because my medical situation is unique there is much mystery regarding how to fix all my problems.
Finally. I thought I would share with you why I haven't posted in a few days. While I was sick and in the hospital I spent a lot of time wondering what I would be like when and if I made it out of there. I knew the big C was going to change me but I wasn't sure how. Was I going to be spiritual, angry, giving, selfish? Would I even look or sound the same? Well, I am different but that is a story for a different post. What I can tell you now is that while I am different my life is still like everyone else's.
For some odd reason I thought that after getting cancer my life would be so much easier. I paid my dues, I would think to myself, smooth sailing from here on out!! Man was I wrong! Life didn't get easier, people don't give me a break and I still have to pay all my bills. No free pass! So, this week I have been to the dentist almost everyday, today I spent 3 hours in the chair. Thats right folks, cancer survivors still need to brush their teeth and FLOSS. My car broke down too! "Life isn't fair" I shouted. The response I got, "No one's is". My reply, "hahaha, well mine really isn't"
If you survive cancer things like cavities and breaking down cars shouldn't happen, right?? Anyways, things could surely be worse. It's like what I told the dentist today in response to him apologizing for the fact that I had to be there and telling me that I was doing well, "No worries at least I know you can't tell me I am going to die while im sitting in this chair"
I'll be writing more very soon. Thanks for all the support.