Stressful, Painful, & Complicated Port Removal!



I had my appt. for chemo-port removal on January 27th. Ports consist of a tube (catheter), attached to a dome-shaped part. The device is surgically implanted under the skin, with the dome placed in the chest, where it will be easily accessible for injections through a needle. The catheter is threaded into a large vein, where rapid blood flow will dilute the drug, and keep it from damaging the lining of the vein. The whole device will be completely covered by skin. Ports can also be used for drawing blood, thus avoiding needle sticks of the arms during clinic visits.

Dr. Euhus made the first incision on my chest on top of the port & was unable to pull out the tube that went from the port to my jugular vein.  (I also had a complicated port insertion during my mastectomy.  He couldn't go in under the clavicle & had to make a neck incision.)  The removal procedure took twice as long since he had to make another incision in my neck to see what the problem was with the tubing.  It seems my tube was encased in scar tissue which he had to cut away until he could release the port tubing safely.  I came home unnerved & in more pain than I expected.  This made me miss my best friend's daughter's wedding shower luncheon on  Saturday & my granddaughter's dance competition on Friday night & Saturday.  This made me sad!  I had to take a hydrocodone for 2 days, but today I haven't even had ibuprofen.  It is tender, but not painful after 2 days - yay!

Well, at least the port is gone!

On a brighter note, chemotherapy is finished (woohoo!), port is gone, radiation prep work is completed, & radiation starts February 1st & will be over mid-March!  Yippee!



It's all downhill from here!  (I hope!)





Radiation Oncologist & Internist Appointments

Radiation Oncologist (RO):
I had an appointment with Dr. Ann Spangler  (RO) on Thursday, Jan. 26th for my "repeat" radiation consultation (the one I had in Sept. was considered out-of-date!) & luckily, they worked in my radiation simulation!  Before you begin external beam radiation treatment, your radiation therapy team carefully plans your treatment in a process called radiation simulation. Radiation therapy treatment planning usually involves positioning your body (they position an immobilizing body form with your arms over your head so that you don't move during radiation), making marks on your skin (I got 4 freckle sized tattoos to mark the radiation perimeter), and taking imaging CT scans (this helps your radiation oncologist determine the exact spots where treatment will be focused).  Thanks to my sweet friend, Carolyn, for going with me for support!  The best news is that I finally got an appt. to begin radiation treatments.  I start next Wed., Feb. 1st & go 5 days a week for 6 1/2 weeks!  The RO told me to get a mild bath soap to use during treatment, a deodorant without aluminum (I got Tom's), and aloe gel for any possible burns or blisters from the rads.  The actual time of the radiation appts. will not be established for a couple of days because the first treatments take longer.  Then, I'll get my choice of times - & I'm hoping for an appt. right before lunch so I can have a few radiation lunch dates with friends!  Girls just want to have fun!!!  Looks like I won't finish until about March 16.  My best friend's daughter's wedding is on March 17th, so I hope I'm not too fatigued from the radiation - a usual side effect - but, I will not do the twist this time or any dance that will injure my knee - LOL!



Internist:
I had an appt. with my internist, Dr. Blake Barker at UTSW, after the RO appt. to solve my Sleepless in Arlington problem.  He gave me a Sleep Hygiene printout & prescribed trazodone 50 mg to take at bedtime.  He said to try that dosage for 2 weeks, & if that doesn't work he'd prescribe 100 mgs to try for 2 weeks, & if that doesn't work he'll prescribe 150 mgs.  Well, the first night it did not work. Sad face!  I got about 2 hours sleep - but may have been extremely anxious for my port removal appt. the next morning.  Friday night I took a xanax & a trazodone after getting approval from my pharmacist.  I slept like a baby!  But I am not going to do that anymore because I am going to follow the regimine the internist laid out for me without adding to it so that he can  be the one to adjust the dosage or add another drug.  So, we'll see how this sleeplessness thing evolves in the next few weeks.  I'm sure he wants to start out with the lowest dosage & increase from there if necessary - which is only good medicine.

I want to post my Sleep Hygiene Recommendations instructions in case any of you have sleep problems:

Sleep is important to health & quality of life.  Poor sleep can contribute to poorer blood sugar, poorer blood pressure control, depression, pain & heart health.
1)  No caffeine after 12 NOON.
2)  The bed is only for sleep and sex.  No work, no laptops, no TV, no cell phones, & no reading that is related to work or something else that is either stressful or stimulating.
3)  Alcohol may help you go to sleep, but will  lead to poorer sleep overall.  After the body processes alcohol, it becomes a stimulant & is likely to wake you up or lead to lighter, less refreshing sleep.
4)  Wake up at the same time every day.   Set an alarm if you need to.
5)  Try to go to sleep at the same time every day.  Set an alarm if you need to.
6)  No naps!  Try your best to stay awake during the day & save your sleep for the night.
7)  If you are having trouble falling asleep, get out of bed after 45 minutes of trying.  Leave the bedroom & find a relaxing activity & a caffeine-free warm beverage (hot milk, caffeine-free tea, etc), & return to bed once you feel  relaxed & ready to go to sleep.

As far as #1,  I usually only have caffeine in my morning cup of coffee.  I have given up poisionous Diet Coke & iced tea with meals because of the artificial sweetener factor. For #2, I don't watch TV in bed, etc., but I am guilty of listening to NPR, which I have discontinued.  For #3, I have given up all alcohol on my healthy eating diet to ward off cancer recurrence.  For #4, I am guilty of sleeping until I wake up - sometimes  late in the morning because of not getting to sleep on time.  I thought sleeping late was a perk of retirement, but I guess I need to set my alarm for 7:00 a.m. because I do hate missing watching Good Morning America & The Today Show (I'm a channel flipper) when I sleep late.  For #5, I have always gone to bed at 10:00 p.m., so that shouldn't be a problem.  For #6, I can not take naps any more than I can sleep at night - sleep eludes me!  For #7,  I need to try this pointer.  I usually lie in bed & fight falling asleep which the doc says starts of vicious cycle of not being able to fall asleep.

My hair is NOT this long yet!!!  I just have peach fuzz.  : (





Sleepless in Breast Cancer Land

I used to never have a problem sleeping.  Since when I first began chemotherapy in October I have difficulty getting to sleep and staying asleep - and I usually don't nap.  I have been telling myself it was from the chemo drugs keeping me wired.  But my last chemo was Dec. 13 & I'd think it was out of my system by now - but I still cannot sleep well.  I know you need to get deep REM sleep for the body to rejuvenate.  But, I still watch the hours pass by before I get to sleep, then I seem to wake up several times before morning.  This is getting old! 

My chemotherapy oncologist thought the sleep problem was a result of anxiety & prescribed me Xanax to take at night, but that does not help with the sleeping issue.  I really don't think I am anxious.  I have had good pathology reports & have a deep faith, so I am not worried about the big "C".  I finally called my internist from UTSW & have an appointment with him next week to discuss this.  I am hesitant to go on prescription "sleeping pills", but I think that is lesser than the evil of not getting rejuvenative sleep.  My body needs rejuvenative sleep while I'm undergoing breast cancer treatment.  I start radiation the first of February & they say that causes fatigue - so I need to be able to sleep to recover from that side effect.

I have tried all the "home remedies" - reading, watching tv & over-the-counter sleep aids which leave me feeling groggy in the morning.  So, I'm anxious to see my internist next week to see what solution he has to offer.

Benefits of Radiation

Fox News.com wrote an article on  October 21, 2011 titled, New Breast Cancer Study Shows Benefits of Radiation.  This is a copy of that article:

Women with breast cancer who receive radiation after surgery are half as likely to have their disease return within 10 years and are one-sixth less likely to die over a 15-year period, according to the results of a new study reported Friday.

Experts say the findings of the latest study of the disease underline the need to improve radiotherapy provision.

An analysis that crunched together the results from nearly 11,000 women who participated in 17 previous trials worldwide -- making it by far the biggest study so far on this topic -- found that a decade after a breast cancer diagnosis, 35 percent of the women who did not have radiotherapy had their cancer return, compared with 19 percent of those who did get the treatment.

Even though radiation is usually given after breast-conserving surgery to kill any cancer cells that escaped the surgeon's knife and to prevent local recurrence, the findings also suggest radiotherapy has a benefit in reducing the risk of the cancer spreading elsewhere in the body.

Fifteen years after the diagnosis, 25 percent of the women who did not have radiation treatment following surgery had died from breast cancer, compared with 21 percent who did.

The findings -- published by The Lancet and compiled by experts from the University of Oxford-based Early Breast Cancer Trialists' Collaborative Group with funding from Cancer Research UK, the British Heart Foundation and Britain's Medical Research Council -- have been welcomed by cancer experts.

Cancer Council Australia chief executive Ian Olver said the previous assumption had been that the role of radiotherapy was "really to sterilize the rest of the breast after breast-conserving surgery."

"You would expect it to decrease local recurrence, but what this study shows is that 15 years on, it's improving survival as well," Olver said. "The radiotherapy is helping to protect women from widespread and metastatic disease."

Port Removal Scheduled

My port removal procedure has been scheduled for January 27.  An implantable port is a thin, soft, plastic tube that is put into a vein in your chest or arm and has an opening (port) just under the skin. It allows medicines to be given into the vein or blood to be taken from the vein. The long, hallow tube is known as a catheter. The port is a disc about 2.5–4cm (1–1½ in) in diameter. The catheter is usually inserted (tunnelled) under the skin of your chest. The tip of the catheter lies in a large vein just above your heart and the other end connects with the port, which sits under the skin on your upper chest or arm. You'll be able to see and feel a small bump underneath your skin, but it won't show on the outside of your body.  My port was implanted during my mastectomy and used later to administer the chemotherapy drugs and to take blood tests. It means that you don't need to have needles put into the veins in your arms every time you have treatment.  The port is removed a few weeks after chemotherapy ends.

The following is from a blog by a surgeon who goes by the pen name of Orac:

It's easy for a surgeon to forget that the insertion and removal of a port represent two major milestones in the course of a patient's cancer treatment. The insertion of a port often represents, even more than the scars from surgery, a daily reminder of the patient's disease, and the insertion of that port represents a long-term alteration of the body necessitated by her disease. It's a constant reminder that life is not normal, a cold, metallic foreign body implanted in her body. Every time a woman feels that quarter-sized metal port under the skin, it's telling her that her life is not what it was; she is not the same as she was; she is not "normal." Even though the implanted port may not even be noticeable even if she wears a wide-necked shirt, other than the small scar left from its implantation, the patient knows its there. Sometimes this provokes complaints that one wouldn't have expected. I've had patients complain that they felt the port while trying to golf, to ride a bike, or even do yoga, and it bothered them. I've had patients who normally sleep on their stomachs complain that they can't do so anymore because they end up lying on the port.  Of course, putting in a port is not particularly difficult (well, most of the time, anyway, when port insertions go bad they can be among the most difficult and frustrating "little" cases there are, particularly because the surgeon gets to sweat under lead shielding as he wields the fluoroscope). However, it is still considerably more difficult than removing one. Removing a port involves making an incision in the skin; carrying it down to the port while avoiding the plastic catheter, which can be inadvertently cut, leaving the end to retract into the vein, where it's difficult to get out; dissecting it free from the capsule of scar that forms around it; and then closing the skin. It usually doesn't take me more than 15 minutes, even if I'm taking my time.  Indeed, removing a port is so easy that it's equally easy to forget what this means to the patient. It means an end to the chemotherapy. It means that the most intense, painful stage of treatment is over. It means reversal of at least one bodily alteration. it promises the hope of a return of what was taken away by the cancer.

I understand from reading BC blogs & community boards/forums online that I'll be left with a nice little battle scar after they remove my port.  But, my surgeon implanted my port to the right of my chest, so the scar shouldn't show in low neck tops.  The only time is will show is when I wear a strapless top!!!!  Hmmmm, don't think I've got any of those!  It will show in a bathing suit, but hey, if I'm lucky enough to be relaxing in a hot tub or sitting on the sand watching the surf come in, I won't give my scar a care!  After all, it is a Battle Scar of my victory over breast cancer!

I have to be at UTSW by 7:45 a.m.  One of my daughters is going to spend the night with me before and take me.  They asked that I have someone there to drive me home - just in case!  Yikes!  I dread this procedure but will hopefully have a positive report to make here after it is done!  Thinking positive!!!  I read this information on the internet:

When you no longer need the implantable port, it will be taken out. This is usually done by a specialist doctor who will use a local anaesthetic to numb the area. The doctor will make a small incision over the site of the port and remove it. The catheter will be pulled out of the vein. The wound is then stitched and covered with a small dressing. You may feel a bit sore and bruised after your port is removed. A mild painkiller will help with this.

This appointment is the day after my repeat consultation with the radiation oncologist.  Looks like I'm getting ready to heat up the highway with medical appointments the next couple of months.

The daily devotional for today in Streams in the Desert gives me peace over the coming months.  It included this poem:

God is in every tomorrow,
Therefore I live for today,
Certain of finding at sunrise,
Guidance and strength for my way;
Power for each moment of weakness,
Hope for each moment of pain,
Comfort for every sorrow,
Sunshine and joy after rain.

Beautiful, isn't it?

Cool Site on Hair Growth!

Check out this cook link of how an artist chronicled her cancer diagnosis & post-chemotherapy hair growth through weekly photographs.  This gives me the idea to do the same thing.

Karen Stack / Hair Stories

It's Going To Be Okay!



As my friend Paula told me, I had my day of panic, now it's back to Warrior mode!!!  Thanks to all my friends who advised me wisely & gave me the support I needed during my panic over the radiation delay.  I'm okay now!  I'm at peace with the situation!

Disappointed & Stressed!

RADIATION DELAY!!!!!!!  I was told by my chemotherapy oncologist (chemo onc) that radiation should/would begin 3 weeks after chemotherapy to give my body a chance to recover from the chemo drugs.  My last chemo was Dec. 13, so 3 weeks would have my first appointment with the radiation oncologist (rad onc) on Jan. 3 so that my treatment is timely & as effective as possible.  I emailed the chemo onc on Jan. 2 that I my appt. had not been set up by UTSW.  I received an email from the chemo onc's nurse that she would re-enter the radiation  referral.  I got a call from the rad onc's scheduler today, Jan. 3, telling me that the rad onc cannot see me until Jan. 26!  That is 6 weeks from chemotherapy & has me concerned!  The chemo onc sent me to the rad onc in September for a consultation.  I did that & signed the consent form for treatment.  NOW, the rad onc is saying that was 4 months ago & I have to have another consultation appt. first!  So why did they make me go to the one in Sept.???  They knew how long chemotherapy would take!  The reason the rad onc cannot see me for so long is because she only sees new patients on certain days & she has meetings scheduled for all those days until Jan. 26!  Geesh!

The reason I am so worried over this is that I know the sooner they can begin radiation the less chance I have of any stray cancer cell metastisizing in another part of my body.  So, call me a worry-wart, but here goes a copy of the email correspondence today between me & the referring chemo onc.  By the way, you send an email to the doctor, but the nurse reads it, speaks with the doctor, & responds.

First email I sent to remind them about the fact that I need a radiation appt. (in italics):

To Dr. Haley:  Just wondering a couple of things. Last chemo was on Dec. 13. Will Dr. Spangler contact me about beginning radiation or do I need to contact her? Do I need to contact Dr. Euhus about removing the port?

Reply from Nancy, Dr. Haley's nurse:

Hi Ms. Ellis,

I re-entered the referral request to see Dr. Spangler so her office will be contacting you. I'll check on your mediport removal when I return to the office on Wednesday. The surgeons here wait until 4 weeks after your final chemo treatment prior to removing your mediport.

Thanks!!--Nancy Sawyer, RN, OCN

At this time, I received a call from Dr. Spangler's scheduler saying she couldn't see me until Jan. 26.  So, I wrote this email to Dr. Haley:

I hate to be a worry-wart, but I was of the understanding radiation should/would start 3 weeks after chemotherapy. Dr. Spangler has a busy schedule for January with dates scheduled for meetings and cannot see me until Jan. 26, which is 6 weeks after chemotherapy. I had a consultation with her in September, but she says since it has been 4 months, I need to have another consultation appt. Jan. 26 is the first date she can see a new patient. I know that radation doesn't even start that day, because markings have to be tattooed & a simulation appt. comes first, also.

So, my question is this: Does it put my health in jeopardy not to begin radiation of any possible cancer cells until 6+ weeks after chemotherapy. Of course, I was anxious to put all this behind me, also.

I think this is the first tearful concern & fear I have had since beginning with UTSW in August.

After continuing to worry about this, I sent another email to the chemo onc:

Nancy, I just wanted to add this to my previous email. I am honestly scared about delaying the radiation. It seems like the delay is because of administrative obligations of Dr. Spangler of which she has no control, with the best treatment option for me not being the priority. I am just very stressed over the thought of stray cancer cells metastasizing before the radiation is begun. I know that Dr. Haley wanted me to begin rads 3 weeks after chemo. This will be 6-7 weeks after chemo. I don't want to cut off my nose to spite my face & ask for a referral to a different doctor if Dr. Haley thinks Dr. Spangler is the best rad onc for me. I am so stressed about this unexpected delay & I know stress is not good for me. I need to hear Dr. Haley's thoughts on this problem.

I received this reply from another one of Dr. Haley's nurses:

Ms Ellis

Nancy is out today. I forwarded your message to dr haley Dr Haley advised if you want we can send request to Dr Rahimi for radiation. Please let me know

So, now Dr. Haley is asking me if I want to change rad onc's.  This was my reply:

I am hesitant to change radiation oncologists because I feel as if Dr. Haley referred me to who she thought would be best for me. MY QUESTION IS: Does Dr. Haley think it is okay for me to delay rads until Dr. Spangler can see me?????

If it is not dangerous to wait until Jan. 26 to see Dr. Spangler, that is what my gut is telling me to do.  I really liked her when I consulted with her in Sept., & evidently Dr. Haley thought she was the best choice for me.  I looked up the other rad onc she suggested & it looks like she just got her rad degree in 2011 - not as experienced as Dr. Spangler.  My mastectomy was on my left side which is right over the heart, so I need an experienced radiologist so I don't get life-threatening complications.

So, I sent this email to Dr. Haley's nurse:

I really felt confident with Dr. Spangler when I consulted with her in September.  I would like to use her IF Dr. Haley thinks is is safe to wait until Jan. 26.  I know that Dr. Spangler is experienced & my mastectomy was on my left side which is right over my heart & I don't want to worry about life-threatening complications from  a rad onc that is not as experienced.  It is my life I am talking about, so I am diligently searching for the best solution to this unexpected delay - which might not be anything I should be concerned about - but I need the reassurance from Dr. Haley about that.

Received this reply:

Ms Ellis

Dr Haley advised its ok to wait till Jan 26.

So, I will wait.  Just didn't need or expect this extra bump in the road.  I wanted to get this all over & done with.  I will have to just pray for strength & peace over all of this.

I don't know what happened to the old positive Sharon today.  She'll be back.  Need your prayers now more than ever. 

Happy New Year 2012

May this year of 2012 be

A year of Health & Happiness

A year of Wealth & Wisdom

A year of Peace & Prosperity

A year of Glee & Glow

And also a year of Love & Laughter...

Happy New Year!

Last year was a year of health trials and tribulations for me with my breast cancer diagnosis & the subsequent mastectomy and chemotherapy.  But, I must say it made me a stronger person & gave me a new outlook on life.  I appreciate each wonderful day, each dear family member, each treasured friend, each bright, sunny day, & each cozy, rainy day.  I am thankful to God for all the love, support, & encouragement that I received from my family & friends.  I am thankful to God for the success of my surgery & all the good test results.  I will be a survivor & be a better person for all that I experience during this little bump in the road.

Yep, 2011 was indeed a little Bump in the Road!



2012 will be another year of fighting & overcoming my breast cancer.  I will go through radiation which is supposed to make you very fatigued.  Even with that, my girlfriends & I are planning a once a week lunch date at some fun place in Dallas - yummy!  Gotta' have my nourisment & giggling, right?  And, well, as far as the fatigue, I know I can just sit in my easy chair, read a good book, watch TV, play on my laptop or iPad if I talk myself into getting one (facebook, texts, & email), or crochet the many afghans I have planned for friends & family - because this rough road, too, shall pass! 

With the good Lord & the support & encouragement of my family & friends  I can & will endure the Rough Road ahead!



The plastic surgeon will give me 6 months to get over the radiation effects, then will be ready to do my reconstruction.  Goodbye lopsided bustline, hello newly constructed foob (what they call a fake boob), lifted other boob, & tummy tuck (he's using part of my tummy to build the new boob) - yeehaw!  That will be major surgery but the final result should be worth it.  Then, I'll have another surgery to build a fipple (fake nipple).  No pain, no gain!

Do I need to get a t-shirt that says Under Construction?

Thanks again to everyone for being there for me this past year!  I couldn't have done it without you!  Have a blessed 2012!