Support Groups

I am fortunate my local cancer center offers a few support groups for cancer patients, survivors and caregivers. I have participated in the nighttime support group for all cancer patients for just over a year and have found it to be very beneficial and which I urge others to consider and try. I understand the idea of a support group may be intimidating or it does not appeal to everyone. There are also some who feel uncomfortable at the idea of attending a support group. However, if you are open minded and open to a new experience then I urge you to give it a try; even if you only attend one meeting, at least you went and experienced it. And keep in mind not all support groups are the same. If you attend a group and are not sure you like it, attend another group! In addition to my center’s nighttime support group for all cancer survivors, they also offer a daytime session for only women. If I felt the nighttime group wasn’t a good fit for me, I could try out the daytime session.

I remember my first meeting. I wanted to meet someone in treatment or who already had been, to ask what I should be prepared for. For me, attending the meeting was my way of connecting and networking with other survivors. At the time, I was recovering from a unilateral mastectomy and waiting to begin chemotherapy with radiation to follow eventually. My first meeting was small, only three other people; a couple, one woman and I. The second meeting, there were a few more people, and I was surprised to learn one women was an 11-year survivor.

I continued to attend the nighttime support group through the first part of chemo until I became too fatigued from treatment, and the side effects became too much. One of the last meetings I attended was in October 2013 when a few of my fingernails had lifted off their nail bed, a horrible side effect from Taxol. At that time I would put a piece of gauze across my fingertip and nail, and wrap the stretchy brown coban wrap around the gauze and my fingers, just to hold the nail in place to function. Typing was nearly impossible which is my job.

I returned to the support group after a few months off as a way to reconnect and now share the experiences I had over the past year. While I am not happy anyone needs to attend a cancer support group, I am happy when a new member joins us so I can hear their story and hopefully impart a little of my wisdom. A few new faces have joined our group and I hope us veteran attendees help them feel normal in a situation that is anything but at times. I also believe a support group is what you make of it. Be sure to participate and ask questions. No question or topic is dumb.

And finally, I personally believe a good support group has the following qualities:

·         Led by a professional counselor who enforces a set of “rules” each participant must abide by

·         Rules may include, but may not be limited to:

o   Confidentiality-participants should not disclose discussion within the group with others outside the group. Don’t go to work and share the stories and/or information about the other patients

o   Everyone is allowed an opportunity to share their feelings/experiences. One person should not dominate the conversation.

o   No interrupting-one person should talk at a time

o   No judgment of others, no laughing or making fun of their feelings, experiences, etc.

·         The leader should allow for introductions at the beginning of the meeting. This can be as simple as first name and how long you have been a survivor/caretaker to include as much information as the person is comfortable sharing.

·         Participants should be encouraged to share and participate, but not forced to speak. This can be an intimidating experience and the first time they may want to observe more than speak. Respect this and let them know it’s ok to participate or just listen to the other members.

·         The group should have light snacks/refreshments. Food provides comfort and is an excellent way to break the ice between persons. Make it simple: a vegetable tray, cookies and bottled water are plenty.

My year in pictures May 2013-June 2014

 Chemo #1 - this was my room. The first time you have chemo, they give you one of these rooms. I brought my pillow, tablet and water bottle as I didn't know what to expect.

 This is the view from my chemo room - not very exciting. After the first time, I opted to sit out on the floor with other patients where it was more light and airy and I could see the sunshine and the life flight helicopter take off from time to time!

 This was the day I got my head shaved. Ch-Ch-Ch-Chia Pet anyone? :)

 One good thing about Chemo is that you acquire a nice selection of scarves! I was fortunate to find these at a garage sale just before losing my hair.

They call it Red Devil because of the punch it packs! Adriamyacin or Doxorubicin is the official drug name. But I rather liked referring to it as The Red Devil! :)

 They multiplied! Three of these are for nausea, two are thyroid, two are Potassium supplements I was forced to take during treatment - and the list goes on and on......

 Mike (a.k.a. The Defector) and Heather, two awesome nurses. This was the night I was admitted to the hospital in November 2013, and one of Mike's last nights before he left the chemo ward to work in ICU.

Ah, this was a much better view while sitting during chemo. I loved to see the helicopter come in and take off the North Tower.

 Yes, those are ice packs on my feet. Deploying the "cold therapy" methodology to combat Taxol's terrible side effects. Good thing I always had my fleece blanket handy as my hands and feet would get cold during the hour-long drip.

 It started with this finger. Ironically it was my middle finger on my left hand that turned black and the nail raised off the bed. I would hold it up and say, "Look at my finger" and shock people who thought I was flicking them off.

 This is post surgical after having my fingernails removed. Sick I know. Thank you Taxol.

 Left hand after surgery. First fingernail removed, middle finger nail fell off the day before surgery. Figures.

 Right hand after surgery. First three finger nails removed. Thanks again Taxol.

 My first blood transfusion. Levels were low and I was looking pale and feeling exhausted. The added blood really made a difference, even thought it was short lived. I have always felt it was important to be a blood donor, but now I really can appreciate everyone who donates to help someone. Thanks donor. :)

Second blood transfusion while I was in the hospital (as I like to call it, Spa Carle) in November 2013. Notice my fingers are still bandaged as I had not yet had the fingernails removed (Dec. 20). I remember it was a pain trying to keep them bandaged and protected.

 Cheers! (If only that contained something good to drink instead of ice water) Damn I am bald.

 Radiation Fashionista! The lavender cape I wore every day during radiation. Loved the cape - so easy and comfortable.

Steve and Amy helping me into the radiation machine. 33 days of this, but it went fast.

Coming out of Chemo Fog

I feel I have started to come out the chemo/radiation fatigue and feel more like myself again. It has been a long few months of feeling tired and being careful to expend my energy on what's most important; family and work. Here is a picture I found from August 2013 when I was getting the last of the A/C chemo I received. Note the skulls on my headscarf - I also have on my skull earrings! Some women feel it's important to put on lipstick and makeup and dress up to feel well during chemo; I felt it was important to wear my skulls and let the A/C know I was a force to be reckoned with! :)  

 

I know it has been a long time since I have blogged, and so much has happened. I wish I had had the energy to continue to blog throughout my chemo and radiation, however, the fog got me. I just didn't care. I'm sure other folks who have had chemo understand that feeling of just not wanting to do anything. I thought about it time and time again, but just couldn't bring myself to do it! Such a horrible feeling. However, that's now changing and I hope I can make up for some lost time and document what I went through to the best of my recollection.

So, it's probably best to put my timeline here as a starting point of this journey (which is still in progress):

My timeline

2013

May 10 – diagnosis via a phone call from my primary physician at 3:15pm as I was just getting ready to start the rehearsal for our graduation ceremony with faculty/department heads/deans in my college - it wasn't a good end to the day...

May 24 – surgery, left mastectomy by Dr. Ray

July 8 – return to work!

July 11 – first round of chemo… my first meeting with “The Red Devil”!

July 25, August 8 and 22 – Red Devil’s #2, 3 and 4

September 5 – second round chemo, weekly treatments…. my first meeting with “Terrible Taxol”!

October 24 – fingernails are starting to boycott Taxol (ice/cold therapy is not working…)

October 31 – Best. Chemo. Ever. and Halloween!

November 7 – last chemo, but I didn’t realize it at the time

November 14 – showed up for chemo, and was admitted to hospital for a port thrombosis

November 15-18 – Spa Carle (no, not really….I really wanted to be AT HOME!) Worst. Patient. Ever! I drove the nurses nuts by being too independent. Ashley #2 (one of my RN’s) actually programmed my bed at one point so I couldn’t get out without the alarm sounding.

November 28 - Thanksgiving and a small break from treatment to feel better and gear up for radiation

December 20 – fingernail removal (5) ….I much preferred to be at the ACES December Graduate Reception

December 23 – Radiation begins, 33 daily treatments

 

2014

February 3 – last “Tangent” radiation

February 3-11 – Week off to heal as skin is breaking down and angry looking

February 12 – first of five final boost treatments

February 18 – final radiation treatment

March - continued my Herceptin treatments every three weeks

April 8 - biopsy on left mastectomy needle core biopsy (2 spots): Fibroadipose tissue with fat necrosis, fibrosis, dystrophic calcifications and foreign material with foreign body giant cells. Negative for malignancy!

June 9 - I start a new job! I can't wait as I'll be working with a great group of ladies, and for someone I really respect.

 

Stay tuned for more to come.... :)

 

 

 

Pinktober is over!

Breast Cancer Awareness month (October) also sometimes referred to as "Pinktober" due to the large amount of pink ribbon corporate campaigns is over. While I was honored to be a small part of the awareness by giving a PSA which aired on three local radio stations during October, I'm glad the pink craze is over! I like my money and support to stay local for the most part, and I was tired of being asked if I wanted to contribute a donation toward BC awareness when I was shopping this month, only to ask and be told the donation went to a national organization. I never know how much of what is donated is spent on actual research and/or patient needs vs. administrative fees or used to pad the pockets of high-salary executives at those national organizations.

The support I have received is amazing. So many folks care and want to help in any way they can - I have been lucky to have a lot of good people in my corner. I was sitting in the chemo suite yesterday and overheard a woman talking to a nurse about how she basically had to go on disability because her boss was not understanding and made her work life almost impossible; she just couldn't take it anymore and left her job. I couldn't relate as my boss and supervisors have all been so understanding and supportive, that I couldn't imagine being faced with having to leave my job and take even short-term disability because my employer was not understanding. I know there are those out there, and I am thankful that I am in the position I am. I received a card from my aunt who has not spoken to me in a year after an uncle told lies about me and she took his side. No olive branch was extended in her letter to repair our relationship, but rather the card was basically just a way for her to tell me she found out about my breast cancer and "I was in her prayers." I want to say to her, "Don't pray for me - pray for yourself!" I didn't need breast cancer to show me those I need to have in my life vs. those I need to cut out of my life. Auntie is definitely one I can cut out and not look back.

I have three treatments left and I can't wait-November 21 can't come fast enough! I was switched from Taxol to Docetaxol (Taxotere) for my last four treatments. My fingernails are horrible, two are trying to come off and are extremely painful, and I had some pretty significant bone pain that lasted until Tuesday this week (which is very uncommon), so my doctor and I hope the Docetaxol will be a little kinder on the fingernails and bone pain and not as toxic as the Taxol. Of course, Docetaxol comes with different side effects, but hopefully they won't be as significant as what I have endured on Taxol.

Terrible Taxol is Taking its Toll

This past week has been pretty rough. My bone pain was pretty strong on Sunday and Monday, and my mom ended up informing my doctor about it (as she works in the cancer center) and my doctor prescribed stronger pain pills which have seemed to help. Over the weekend, my left middle finger started to swell and the nail looked like it was raising. By Sunday, my finger was turning black around the nail and it looked like I had closed my finger in a car door. I call it my "Halloween Finger" as its black and gnarly looking and, well... just in time for Halloween! I could seriously scare the crap out of some people with it. Monday I noticed the fingernail on my first finger on my right hand was coming lose on one side. Denial was working well for me and I was trying to be gentle with it so as not to lose it; that thought just creeps me out. I don't do well with fingernails and eyeballs - they gross me out when there are problems with either of those! Mom and I were so concerned about my middle finger possibly being infected that I was able to get an appointment with the on-call oncologist Tuesday, October 22 and have it looked at. Just before I was walking out of work to go to the appointment, I was fussing with my wallet and I'm still not sure exactly how it happened - but my finger slipped and my nail caught and ripped, and almost all of it came off my right pointer/index finger. I was in soooooo much pain. It seriously took my breath away for a few moments and I was sobbing in my office. I eventually composed myself enough to grab a Kleenex and some tape from my desk and wrap my fingernail so I could leave to drive myself to the clinic for my appointment. I cried almost the entire way there from the pain and also a little frustration of having crappy nails that are falling apart! The good news is that my middle finger was/is not infected. The bad news is that the finger is scary and that's the result of Taxol. Just one of the side effects I'll have to live with for now.

Chemo Countdow

I'm now five treatments into the T/H combo of chemo that I will receive, and so far the Taxol and Herceptin have had some nasty little side effects that are different from the Adriamycin and Cyclophosphamide that I previously received.

I was lucky on A/C in that I didn't have many side effects. A small rough patch on the roof of my mouth and a little soreness on my tongue around the fourth treatment, a very little bit of diarrhea, but no nausea. Food didn't taste very good and some was just downright disgusting. But otherwise, I was never "sick" from the A\C combination.

Taxol/Herceptin however, sucks. The first treatment was by far the worst. The infusion went fine and I sailed through work on Friday, September 6, but all hell broke lose that weekend. Saturday I woke to pain and feeling cold. I'm never cold. I'm always sweating and bitching about the heat, so to be cold in early September is odd for me. My legs felt like what I imagined it would be like to have "restless leg syndrome", and ached; I vaguely remember shin splints from my time on the varsity basketball team in high school. As I lay in bed, I would constantly keep moving my legs and trying to get comfortable, but nothing seemed to work. Saturday night I was shaking so bad my back hurt, my spine and shoulder blades felt like they were on fire from the violent shaking. My body would tense and I would just shake uncontrollably, and have to use every bit of willpower to make myself relax and stop. However, as soon as I got relaxed, the shaking would return. I was wearing a long sleeve T-shirt, under 2 blankets and still couldn't get "warm" or stop shaking. Finally, exhausted I managed to fall asleep but the sleep was restless. Sunday morning I experienced for the first time bone pain. I had heard of this from other patients, but not yet experienced it myself and was honestly hoping I wouldn't! My legs ached and some of my joints felt like I had arthritis. I took 6 ibuprofen in 5 hours and the limit was 8 in a 24 hour period. Thankfully I was able to get a prescription from my doctor for the pain which helped tremendously.

Hair today, gone tomorrow....my secret is out

My hair barely made it to the second round of chemo. Thursday, July 25 I was able to go to chemo with hair even though it had started to come out when I combed it that morning. However, Friday morning in the shower as I wet it and ran my hands over the top, I had a fistful of hair left behind. Friday at 10:30am I got my head shaved. I had read a blog entry from another woman with breast cancer who said nothing can prepare you to lose your hair. She was correct - as much preparation as I had done in buying scarves and caps for when my time would come, I was still not prepared and it was indeed a shock.

Since then, I have been trying to experiment with scarves as the thought of a wig in August just sounds horrible to me. Some scarves have worked, and others have failed. I find the non-slippery, long, rectangular head scarves to be easier to tie around my "Uncle Fester" looking head! I highly recommend having a fabric cap for the days you just don't want to deal with tying a head scarf; they are easy to pull on and go. Put on a pair of dangle earrings, some lip gloss and it's a quick out-the-door look.

One thing I have resented more than anything has been losing my hair. My secret is now out. When I had hair, no one knew I was sick to look at me, and that was fine; it was normalcy for the time being and I knew what would eventually come. Another resentment I have was a coworker who posted a picture of me and her, both in headscarves as she was being supportive of my cause, to her Facebook page and she tagged me. Ouch! When she asked me if she could have a picture, I had no idea she would post it in such a public fashion. I was absolutely horrified to see the photo of me in my cap on Friday - the first day I didn't have hair and before I could get used to wearing a cap - show up on my Facebook page when I had not yet gone public to all my friends and even some family members. Well, that certainly took my secret and put it out there for the world to see in a way I wasn't prepared and didn't authorize. I understand she did it out of support, but I would caution and urge everyone - please ASK someone if you can OUT them on such a social forum before doing so. By the time I realized she had posted the photo and tagged me, too many people had already seen and liked the photo for me to feel like I could request it taken down. I feel violated to this day. This is MY news to share with the world or whomever I damn well pleased - not anyone else's.

Lesson learned......no photos!