Port Removal

I checked into the one day surgery center at 6:45 a.m. on Thursday, November 13. I had a very short wait before I was called back to be prepped for the port removal procedure. The nurse came in and started my IV, asked me some medical questions, got my consent for surgery, and then asked if I had anyone with me. She called for my parents to be sent back and they sat with me. I think we all fell asleep for a short time before the anesthesiologist came in to get my signature and ask if I had any questions. My doctor made a surprise visit before the procedure to say hi to my parents and me. I’m sure he did this because I saw him the week before my procedure and said I would see him next week and then said, “Well, I guess you’ll see me, but I probably won’t see you!” He’s terrific and I would highly recommend him! The OR nurse came in shortly after to wheel me off to the operating room. Entering the room, it was freezing cold and music was playing. I was bummed when she paused the music as I was happy to grove out before konking out! A not-so-smooth transfer from the gurney to the OR table by wiggling to my left and being strapped down Mommy Dearest Style, and I was out cold. The last thing I remember is being told to just breath normal as they put an oxygen mask over my nose and mouth, and taking only three to fourth breaths. I'm sure there was more than just oxygen in that mix!

A short time later (to me anyway!), I awoke in the recovery room. Total time in surgery was less than an hour I was told. I was on Warfarin (Coumadin) since November 2013, and while I had discontinued my doses 6 days prior to the procedure, I apparently had more bleeding than they anticipated. Other than that, everything went as expected and there were no surprises. Yay! 

Waking up and getting moved to the second recovery room where my parents could join me again went quick. I was given graham crackers and cranberry juice and happily devoured them, especially the cranberry juice which felt good as my throat was dry. The nurse removed my IV and I got dressed quickly while my dad went to get the car. Then, a volunteer came with a wheelchair to wheel me to the front doors where my dad was waiting. We dropped off a prescription for pain pills and stopped at DQ to get me chicken strips on the way home. We were home by noon, and I was in bed by 1 p.m. I had a headache, but otherwise felt pretty good. I slept 3 hours, and unfortunately the headache was still present when I woke so I took two pain pills. The doctor had recommended ice to prevent swelling. The cold also helped with the pain (it wasn't really painful, it was more tender or sore than pain) so I used a cold pack wrapped in a towel most of the day Thursday and Friday. 

Saturday and Sunday I noticed a large red area on my chest and right breast. Monday, I called the clinic, concerned about infection, and my nurse suggested I come in that afternoon to see my doctor. I was so relieved when Dr. R walked into the room and immediately said, “That’s not an infection.” Whew! Apparently it was an allergic reaction to the Chlorhexidine that is used as a prep during surgery. He was able to identify the defined area of reaction that was consistent with the prep site during my procedure. While I’m not necessarily happy to have another allergy (I have several already from sulfa, adhesives (tape and bandages), and three antibiotics), I’m thrilled it was not an infection. He recommended Benadryl and in a few days I hope it fades completely. There has been minimal bruising to the area, and it’s already yellow which means it should be gone in a few more days. I think I expected to feel a little better than I have, but the procedure has not been bad at all. Let’s hope I don’t have a need to repeat it! No offense Dr. R!

Pre-Port Removal

I'm having my port removed this week. I'm anxious because I don't want to have another surgery. I wish it was a procedure that could be done in the doctors office, rather than the operating room. I am however, thrilled that it is considered an out-patient procedure as my luck with hospital roommates sucked the two times I have been hospitalized; the first roommate from hell had visitors galore and did nothing but complain, and the second roommate from hell was on the phone at 2am the first night and the next evening started yelling into her phone (I got moved to a private room after that thank goodness!).

I was sitting at the cancer center waiting for support group to begin last week when I saw my surgeon leaving the conference room. He walked over to me and asked how I was doing and came over to shake my hand. I said just fine and that I would see him next week. He responded, "Oh? Having something removed?!" and I said, "Yes. The port is coming out! I guess I should say though, that you'll see me, but I probably won't see you because I'll already be asleep before you come in the room." He chuckled and responded, "I'm smooth like that!" I about fell out of my chair. Oh Dr. R, how I love thee! I'm thrilled he will remove my port, and not another surgeon.

He informed me it should take about 15-20 minutes. I'll update this with a recap after Thursday's procedure!

Mentors, Angels and Advisory Groups

I strongly believe that developing a friendship with a fellow patient or a mentor who has already completed their treatment can be very beneficial.

I met J at a post-op exercise class that our local cancer center provides to patients who have had a lumpectomy or mastectomy. J had a lumpectomy and I had a mastectomy and we would both receive chemotherapy and radiation as part of our treatment regimen. The post-op exercise class is designed to facilitate our recovery by: 

• Teaching simple exercises that will increase early mobility and improve function after surgery
• On-site demonstration of all exercises and handouts for at-home use
• Educating post-op mastectomy patients on techniques to avoid lymphedema
• Providing a group setting for the recovery process

J and I hit it off immediately during that class. In fact after class we walked out of the conference room and sat down at a set of chairs and coffee table where we continued to talk for almost an hour, finally exchanging phone numbers and email addresses so we could keep in touch. And, if you can believe it, she showed me her scar and I showed her mine before we left that day! (Let's hope the security cameras were not being monitored at that precise moment!) Eventually we learned that my nephew and her grandson were best friends, and had attended each others birthday parties; it is a small world at times.

J would learn she needed a second surgery to remove additional tissue and more lymph nodes. I continued to recover from my mastectomy, and had only had my left sentinel node removed and biopsied which came back clean meaning my cancer had not spread to any other of my lymph nodes. Therefore, I was a few steps ahead of J in the next phase of our treatment regimen, and I had more lymph nodes which meant there was less chance of my developing lymphedema.

I started chemotherapy first and invited J to visit me during my second treatment. I told her she could stay as little or as long as she wished, since at that time my treatments lasted 6 hours. I think having her visit me during one of my treatment to see it and having a chance to ask questions made her less anxious for her first treatment. I remember her husband thanked me for inviting her so I hope it offered them both comfort; for her to know what to expect and for him that she was less nervous on her first day! J and I coordinated our schedules as much as possible, both requesting chemo on Thursday's so we could visit. Radiation was not possible as she requested an early morning time to get it over with for the day, while I requested the last possible appointment they had so I could continue to work full-time. I would work then go to the clinic for radiation and then go straight home. 

As I recall my treatment I am thankful I was able to experience it with someone I trusted and respected. There were other survivors of course that I met throughout the many stages of my treatment who had gone through all or some of the same experiences (some more recent than others), and who offered their wisdom, but J and I went through this together. There is something special about the bond you form with a person experiencing a situation at the same time.

Now as I recall treatment, I find I want to offer my wisdom to others who are newly diagnosed and have a million questions. I signed up with Imerman Angels, an organization that offers one-on-one cancer support by matching mentors with newly diagnosed patients who request someone to talk with. I learned about Imerman Angels from another cancer survivor in the evening support group I attend. I'm not sure how we got on the topic, but one of the survivors mentioned she was matched with a woman through their organization and they kept in touch via phone and email. That night I looked them up online to learn more about their services. You can view their webpage at http://www.imermanangels.org/. I completed an online questionnaire and spoke with a caseworker, and I have been placed on their register to be matched with someone in a similar situation. They try very hard to match persons with similar experiences for the best results, so it may be one week, one month, or even one year before I am matched with someone seeking a mentor.

I have also been invited to participate on my local cancer center's advisory group as a cancer survivor. The advisory group has about 20 members who meet quarterly for two hours in the evening to discuss important topics to medical staff, patients and caregivers and to share what works well and suggest improvements. On October 28 the advisory group discussed the importance of research and the partnership with our local University and the value of specific studies to patients; the new in-patient cancer ward in the hospital which is scheduled to open December 2014 or January 2015; and the development of a patient medical history form that can be given to newly diagnosed patients as a way for the medical team to gain insight into the patient and their medical history. During the meeting I was about to mention the benefits of a mentor program when the director informed our group that a mentor program is nearly impossible for them to coordinate due to the privacy law HIPAA, the Health Insurance Portability and Accountability Act. Since it didn't sound like my local clinic could easily provide a mentor service I joined Imerman Angels and hope to meet another young woman recently diagnosed and answer her questions and give her a person to talk and ask questions when needed.

I am excited to serve as a mentor through Imerman Angels as well as serving as a survivor on the clinic advisory committee, and hope the information I share with others will offer them as much comfort as I received from the survivors I met throughout my treatment.

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.... :)