Posts Tagged ‘oncologist’

quick update

December 8, 2010

I’ve been remiss in not updating my progress here.  Sorry.  Fulltime work, going to PT and medical appointments along with motherhood and life in general…keeps me busy.

PET Scan – Radiation Oncologist said, “stupid test, too expensive, inconclusive..”  Also said he’d make the appointment for me to see Dr. Butler….the queen of all docs, the “Surgeon” and I say that with a mix of both fear and respect.  Butler has more experience than anyone else in town with breast cancer and has seen plenty of fat necrosis, tumors, and all things foreign in breast tissue.

My appointment with Butler was this past monday, and her opinion on the lump, after a considerable amount of time wielding the ultrasound wand was…………the lump is “rib”.  The lump will not have a needle stuck in it. Too close to the heart and the lungs, and risk of puncturing a lung or worse is too great.  Great…good news, right?  Wish I could get my mind to believe that.  In my heart I don’t believe it, but I guess I have to believe it.   I’ve had Medical Onco, Plastics Guy, Radiation Onco, and now the Surgeon all say, “nah….probably not tumor.” 

My Supreme Surgeon did, however, express great concern with the decision of GP to take me off of blood thinners after only three months.  Concerned enough to insist that I call the Hemetologist/Oncologist at U of M to get another opinion, and while I’m at it (she said in her most authoritarian way) get her opinion on the method and plan for the finish of the reconstruction (which is currently planned for late January.)  She didn’t like the PS plan to just remove the lump….because after all, she thinks it is my rib.  My rib grotesquely contorted out of shape.  From the plastic surgery. 

*Sigh*

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Saturday, 10-9-10

October 9, 2010

I’m a little worried that the big hard mass I can feel in about the “11:00” position on my left chest is something…..uh, something to worry about.  Found this last thursday night.  Friday I saw Plastic Surgeon nurse, who thinks it is just a part of my ribcage.  I was relieved (sorta) that she was not as alarmed as I was.

But I don’t think it is normal bone.

And I think I’ll have to call one of the onco’s to get another opinion on Monday.  Think they work on Columbus Day?

Fatigue is real.

September 2, 2009

Yes, I know I haven’t posted in awhile and thank you for calling to see if I am OK, but it is just that the fatigue of four chemo’s is real.  When Dr. Schott said the effects of chemotherapy is culmulative, she wasn’t kidding.  Actually, she (and NP, Joan) were so right on all their predictions, that I will just believe them completely from now on.

This fourth round of chemo hasn’t been as horrible as round three was, but still, itchy hands and feet, no hair, searing hot flashes, fatigue, and bone pain.  Good news on the bone pain though, if you eat ibuprophen like candy, it is actually bearable.  I took Joan’s recommendations this time and have been downing multiple Motrins at very regular intervals, whether I have pain or not, and it is working pretty good.  No collapsing because of intense and sudden pain this time around.  Countin’ my blessings however small they may be!!

The hot flashy thing is a trip though.  Last night (for kicks) I recorded each time I was wakened when I voilently threw off the covers and dove for my water bottle.  My bedside post-it note pad has the following times recorded;

11:00pm, 12:24am, 1:53, 3:30, 4:19, 5:46,

and then a little break…7:30am

Then, all day, I only had two, maybe three hot flashes. Whats’ up with that?  Why does the body save the fireworks for the overnight hours?  So they can be seen against the night sky?  Is this some kind of sick entertainment for extraterrestials we are not aware of???  (I have chemo-brain…….I’m allowed to go off on whacky tangents.)  If the body seeks balance, this does not seem to be the way to do it. 

As if that is not enough…

I am still trying to process all that was said during the last U of M visit as well, namely the option of participating in the “Phase III Trial of Bisphosphonates as Adjuvant Therapy for Primary Breast Cancer” Clinical Trial.  I am trying to find non-fatigued time to do some independant research on this, but the basics are: Bisphosphonates seem to strengthen the bone, and in previous studies of women who did not have chemotherapy, they provided a 30% better chance of NO  relapse of breast cancer (in the bones, a common place for relapse of BC apparently).   Sounds good, right?  But, not so fast….. there is this whole world called “risks/benefits” analysis……of course bisphosphonates as a drug/adjuvant therapy have risks, as well, and one of the risks  is osteonecrosis of the mandible, and to a lesser extent the maxilla.  (I think this means death of the jawbone.) Of course, this occurs in a small percentage of the people who take this drug, but enough that my dentist wants to talk to me about it before I sign up….so back to the tooth man next week (again).  Part of me really wants to go for this one, because a recurrance of cancer in the bones just sounds so….much worse.  Can’t really just cut ’em off like we did with the breasts.  And if my jaw bone goes south, well that’s bad I suppose, but not as bad as dying from bone cancer, right?  I really hate these life and death decisions….I’d like to go back to deciding what kind of wine to have with dinner. 

Just being able to have wine again will seem like a gift.  As soon as that mettally-mouth thing goes away, I’ll have another small blessing to count.

Tomorrow I get to meet the Radiation Oncologist, Dr. Rubin, for the first time.  I have heard wonderful things about him.  I sooo hope I like him and his recommendations.  I’ll let you know here first.

chemo crud creeping in again

August 30, 2009

Yuk.  Once again.  Fingers ache, vertebrae seem stunned, feet and hands itch, horrible metal mouth, searing heartburn, all complements of chemotherapy.  In addition, just as my Oncologist predicted back in June, I have a new side effect: hot flashes….except they are not timed to infusions, I think they are here to stay.  Apparently when you are my age, chemotherapy throws you into menopause whether your body is ready or not.  I guess I am thankful that I can at least semi-function for an hour or so at a time….but I really have to think about what it is I intend to do.  I sure do hope this is the last time I ever have to endure chemo, but of course, you know I think about all those stories I have heard…..from the survivors themselves, of relapses, and more treatments.

Can’t write anymore right now.  Each time I begin a new paragraph I sound too pathetic.

working through it

August 13, 2009

Well, today is Thursday, day 7 after chemo, and I am learning new things.  Like how to work through discomfort.  I have a new appreciation for people with chronic diseases who just learn to live with less than optimal conditions.  Thankfully, I’ll only have another month of chemo-crap to process through my body.  I’m doing so much better than last weekend, I actually walked for 20 minutes this morning, although when I came home and sat down, I got to experience the weirdest aching in my bigger bones, like they were saying “Oh nooooooo, you either have to keep moving or don’t do anything at all!!   If you rest, we’re going to come up and bite you BIG…that’s what you get for trying to function again…he he he he……”     Only one more month one more month one more month………………..

Yesterday I met Dr. M, a Medical Oncologist in Toledo for another opinion on radiation for me.  (BTW, I liked her.)  Oh, how I had hoped she would make my decision easier!!   Nah……that didn’t happen. She, like other docs, was careful to detail the facts of the cancer, explain options, describe the traditional treatment plans, and the plans some oncologists are favoring.  She, without actually saying it, seemed to suggest that she would not recommend radiation for me, but asked me if I was a “gambler”.  Adding radiation to my treatment plan is a safe thing to do, even though it only adds a very small percentage of survival to my outlook.  I could “gamble” and not do radiation and I might be in the group of women like (97, 98 out of 100) who do not have a local recurrence (meaning in the chest wall or breast area) of cancer…..OR I could be unlucky and be one of the 2 or 3 women who does have the recurrence.   I told her that I don’t consider myself be be so lucky anymore.  That’s a sobering thought.

So now I am still on the fence.  My roller-coaster is going up the incline, albeit ever so slowly.  Every six hours or so I don’t have a definitive answer, I feel like I’m adding another mile onto the incline of this crazy masochistic trip.  At this moment, I am leaning on the side of just suckin’ it up, and taking the radiation.  I really want to live cancer free for the rest of my life if possible, and right now if that means trading 5 weeks of the hassle of radiation for 2% better chance of no recurrence….well, then that’s what it means.  And no whining, too.  So many people have it so much harder than I do and I really am grateful for all the goodness that cancer has brought into my life.

highs and lows are coming pretty fast and furious

August 9, 2009

wow.  This time around the chemo game the reality has changed.  For the first two infusions, it took five to seven days for the poison to really cause any discomfort and significantly affect my day to day living.   Not so for chemo #3….only took 48 hours to make me feel awful.  I am amazed, awed and dismayed. 

It is really amazing, how powerful the drugs are.  I don’t hate them, I even appreciate what they are doing.  I know that they are killing the DNA of dividing cells, even the good ones.  I want the chemo to do it’s job, even if it makes me feel bad.  I’ve even had a little anxiety about maybe four treatments isn’t enough and asked Dr. Schott if she should add a couple more infusions on to my plan.  She said no.  I would do it, I swear I would.  This whole experience has been such a pain in the ass I don’t ever want to do it again. 

I can’t believe how tired I am.  For the first two infusions yea, I felt tired….but I laid down, rested, maybe even for hours, but then I got up and felt OK to do something.  I dunno, but this time around it feels different and I am worried.  I feel tired and achy from the core of my body.  It seems like my spine is taking the hit this time around.  I feel the throbbing in my cervical vertebrae and in my scapula especially this morning. 

I feel so bad for my kids….what a bummer I am for them to live with this summer.  They have had way too much TV and video games, and I feel bad about that. 

I am especially bummed out that I don’t think I’ll make it to see the Unitarians today.  They are a source of goodness and happiness that I will sorely miss this week.

continued..

August 6, 2009

Tuesday

So after five days, I am finally able to listen to the tape of my visit to Dr. H, Radiation Guy at U of M.  It doesn’t really help much.

I had pretty much over the weekend decided to stop whining so much and just suck it up and at least take a positive attitude about the whole radiation thing.  But listening to the tape of the consultation, well….you tell me what you think….here are a couple direct quotes:

“”you fall into a grey zone regarding the rules of radiation after a mastectomy”  and  “there is a lot of discussion in the literature amongst the experts of what is the right thing to do in this setting, because there are some downsides to doing the radiation” .  Neither one exactly inspires me to jump up on the table and get into position. 

On the other hand….I just want to be the best patient I can be, be informed, proactive and do everything in my power to rid my body of these despicable cancer cells.  I just keep thinking about seeing Louie and Charlie graduate from High School, and then if they choose, college, too.  What can I do to ensure that I get to see those things?  Is it choosing radiation as part of my treatment plan??

Lou and I have been reading so much about this.  Looking for original studies, information prepared for the layperson, and talking to people who have been through it, and dammit there really is no clear cut answer.

Over the weekend I was surprised to see on BREASTCANCER.ORG :  Radiation may be recommended if four or more lymph nodes are involved OR for premenopausal women, at least one lymph node was involved.  hmmnnnn this is the first time I have seen the “premenopausal” clause…..I guess this is because if you still produce estrogen, it provides food for the cancer  cells (if your cancer is estrogen receptor positive, that us.)

Wednesday

Had three good visits today.  First, I had a “Healing Touch” appointment with Veronica at The Victory Center.  As usual, it was insightful, calming, relaxing.  She is great, and reminded me (again) to come from a place of unconditional love, and to (again) live in the moment.  To ask the universe the question and wait for the answer.  I already know all of these things, but at this juncture, I need someone to remind me of them.  I really need a Veronica in my life about every other day or so right now.

Saw Dr. Barone, my Plastic Surgeon for my last expansion on my right side (150 cc’s).  To all of you outside of Ohio….wow, too bad you can’t see this big girl.  She’s a beaut in a round-expansion implant-kind of way.   I’m thinking I gotta be careful about bumping into things until I get used to my new perameters!  Only thing is, I really got to step up buying a boob for the left side, because I am lopsided in a really dramatic way now.  God, I hope they don’t have to special order them.  I hope the boob store just has them “in stock”.  Guess that should go on the “to do” list this week right after I figure out how best to keep living.  But on the serious side, Dr. B provided the time for a serious talk about cancer options, specifically radiation.  I really appreciate this doc for his time and willingness to talk, and look me in the eye when he answers my questions.   Plus, he has the best nurses ever.  And, he has the nicest office staff, too.  Thanks Suzi for taking additional time with me today.  It meant a lot to have that additional conversation.  You are the greatest!

Last good visit was with BFF Tahree.  We just talked, drank wine, visited a neighbors’ garden and then out to dinner.  What a good pre-chemo evening, to talk to other “girls”.

Thursday (tomorrow…or by the time this posts, today)

Get records for second opinion.  See Geeta, U of M Physical Therapist Extraordinaire.  Blood work.  Appointment with Joan, NP and Dr. Schott, Oncologist.  And if I’m lucky and blood work is good, chemo at 3:30.  Send good energy my way…..I’ll be in Ann Arbor..

A big disappointment

July 9, 2009

Well today was supposed to be chemo #2 day.  I had even planned a party tomorrow to celebrate being halfway through “the treatment”.  But no, it was not to be.  I am so disappointed, I can’t even begin to tell you.

My day began with a consultation with the most excellent Physcial Therapist, Peeta.  She is very good, and shortly after beginning my treatment she looked at my chest, specifically the right breast and asked, “why is half of your breast red?  I think you have an infection.”  I felt alarmed and crestfallen all at once.  The right breast is the one with the expander implant in place and had just been expanded yesterday by my plastic surgeon.  Awww jeez…and the expansion was not even that uncomfortable yesterday like in previous visits.  How could it be infected?  Anyways, Peeta completed her PT, gave me a prescription for a compression sleeve to relieve some of the discomfort of the left arm where all the lymph nodes were removed, and sent me on my way, with instructions to show this condition to Dr. Schott, the oncologist.

Both Dr. Schott and her nurse practioner Joan were not in today, so I had a new and diligent NP, Tammy, who took one look at the right breast and pretty clearly said she did not want to take a chance at chemotherapy with even a small potential of an infection.  I kind of whined about it, and she asked if it was OK to pull another Dr. in to examine my breast.  Hell, I would let the janitor take a peek if he would have said, “Nah…it’s OK!”  So of course I said YES, YES bring another doctor in.  It took what seemed like a very long time…… I laid there on the table and tried not to cry,  tried not to feel sorry for myself, but I felt overwhelmingly sad.  Eventually a  great big Doctor came in, took one look at what honestly is a very light shade of pink on one half of the breast only, from the vertical scar to the center of the chest, and he quickly said, “no, I don’t think you should do chemo today.”   They explained that it was probably only a very slight risk of infection, but if it was an infection having to do anything with the expander implant, then undergoing chemotherapy at that time would only increase the chance of losing the expander implant.  After all the work and energy that has been put into that side of reconstruction, it would be a shame to lose it, and go back to square one.  They gave me a prescription for antibiotics, and sent me to reschedule all the rest of my my chemo appts.

Of course.  They are right.  I know they are “erring on the side of caution”.  But another week of delay means another week of missed work.  Another week further away from being done with chemo.  Another week delay of getting some sembelence of my life back. 

But I think they are right.  But I am so sadly disappointed.  I have been looking forward to this day so much.  It takes so much energy to plan for chemo, to be “up” for chemo, only to have it taken away.  At the end of today, I was going to be halfway done, and now I have to wait another week.  And I know it is the right thing to do as I write through my tears.  I wish I were mature enough to accept this today, but as with the other difficult things I have experienced lately, I guess it will take a day before I straighten up and stop whining about it.  :^(

24 hours and all is well…

June 20, 2009

Well, it has been more than 24 hours since my first infusion of Taxotere and Cytoxin, my personal medical recipe for Chemotherapy, and all is still well.  I had a good nights sleep, woke up really hungry, had breakfast and coffee, and still felt well!  This morning I actually gave myself an injection (yes, that is with a needle) of “Neulasta” , a drug which is used to stimulate the bone marrow to make more white blood cells.  According to my medical literature, “chemotherapy may reduce the body’s ability to make normal white blood cells, and thus fight infections”. 

Also in my IV last night (in addition to the “anxiety medication” ) was a long lasting antidote for nausea, which is supposed to last for 3 to 4 days.  So I am going to start crossing all my fingers and toes on Sunday, plus I have a ‘script for meds specifically for nausea and the number for Jane, my nurse practioner extrordinairre, along with her “pager’ number.  I have been told to take the drugs at the very first queasy moment, and then call them if I start to “hurl”.  They want to know!  Cool!  At U of M puking is serious business to be avoided, and I have been assured that if it becomes a problem, they care, have other drugs to try,  and will work to fix it.

Another side effect I’ve been told to expect is fatigue…..well, that has been a companion for awhile now, and that one is fairly easy to fix.  Although when I took a long nap a few days ago, Louie woke me up with the fascinating news that he had just learned how to make a stink bomb with a tennis ball, lots of dog hair, and a sparkler for a fuse!  Thanks a lot YouTube!  So now I am a little wary with this sudden interest grooming Kia, the dog……..

Now, “chemo-brain” is a more elusive potential side effect the medical professionals address more warily…….they suggest that it is fleeting for some, nonexistant for others, and perhaps an extension of one’s typical “space cadet” status….  Oh dear.  I have to write lesson plans for 18 weeks for two new classes I am teaching next year.  I feel added pressure now to get to it, before any of these side effects intensify…….which apparently all have the likelihood of  culumitive annoyance…..the longer on chemo, the worse the side effects get.

But, at this point in time, these are only my “worries” not my realities.  I will follow the directions of the nurses, number one of which is a minimum of 15 minutes of exercise a day.  (Cool-Paula, are you listening?  That means a walk tomorrow morning!)

BTW, my hand where the IV went in, is still beautiful.  Dr. Schott, you were right, your nurses (in this case, Nurse Nancy) are very very good!

Funny thing that happened yesterday at the Cancer Center.  Suddenly I felt kind of luckey….a lot of people who appeared to be younger than me, looked to be a whole lot worse.  And then there were the children with pretty little bald heads.  Then you know getting cancer is just something that happens.  It is my job to get over it, and work to help educate others and support those who support us.

new plan?

June 13, 2009

Here it is Saturday, and I have been working on this post since Tuesday.  Quite a long time because I am so……confused?….no, that’s not the right word.   Conflicted?  No, that’s not it either.  I want to be able to make an intelligent decision based upon facts and I am stuck in “emotion”.  I know what my heart wants to do, but I am so concerned about making the correct decision, because well……it all comes back to desperately wanting to see my kids graduate from High School.  It is so easy for others to cheerily reply…..”oh, you will!”…….and I think that might be true, but I don’t know that.  These are the “tear-jerker” thoughts I have at a moments notice.

Wow, how interesting it was to go to U of M on Tuesday and listen to a whole new version of a viable “treatment plan” for my unique cancer case.  I don’t mean to make my personal pack of terrorist cells sound like they are something special or anything.  (Well, they are kind of special to me, even though I intend to kill them).  At University of Michigan, the Breast Care Center is quite a big place.  Lots of breast cancer walks out of the elevator doors there.  I felt like a sick chick suddenly opening the doors to the Cancer Land of OZ.

My experience at the Breast Care Center began with a review of my history, a brief physical examination, and Dr. H (a “resident”, I think) brought up a website called “adjuvantonline” which has statistical data to help an Oncologist discuss the “rate of recurrance” of cancer, or the “mortality rate” with your personal information plugged into the program.  Then they enter data of different types of therapies and get a bar graph that demonstrates the risks/benefits of each therapy for you.  I know some are skeptical of this site, but if a major medical/research facility uses it, it’s good enough for me.

OK, the whole motivation to go to U of M was to get a “port” placed in my arm for delivery of chemotherapy meds.  Imagine my surprise when Oncologist/Internist Dr. Schott said, “No…you don’t need a port.”  I was stunned.  What I had taken as acceptable reality in Toledo was kind of “old school” at U of M.   Dr. S  recommends four treatments of chemo three weeks apart.  Only four treatments?  Yea, only four treatments.  Not enough to have the inconvenience of surgically inserting a subcutaneous port.  The ports make it easier for the nurses to administer the meds but also have risks of their own, as well.  She assured me that the nurses at U of M are  very good at what they do, and they will be able to find a vein sufficient enough for chemo meds, and no, they won’t “collapse” my veins and yes, it will be all right, they do this all the time with women my age and older. 

The most significant difference between Toledo and U of M?  In Toledo, I have Stage II Carcinoma, at U of M, I have Stage I carcinoma.(**see note at end of post)  Wow.  Big difference.  I could give more examples of differrences between the two places like, recommended behaviors, suggestions for short term planning, etc. …but the staging of the tumor?  Well, that really muddies the water.  I have been evaluating  my records from Toledo to try to figure out what grading scale was used, U of M indicates the Scarff/Bloom/Richardson grading scale.  I have read and researched, and I honestly don’t know which place is correct.

Of course the “stage” of your cancer is vitally important when determining the adjuvant therapy (nice way of saying chemo-poison and other drugs) most appropriate.  Here there is a significant difference in “suggested method of treatment” (I word it that way, because the Oncologists I have met have been very careful to provide a choice, and not be too pushy about which of  the two is better.)  In Toledo, my Onco-man has suggested a TAC regimen. This means: Taxol, Adriamycin and Cytoxan for six treatments, three weeks apart…about 18 weeks of chemotherapy, followed by “hormone” therapy, to block estrogen and progesterone I still naturally produce (my cancer “feeds” on estrogen and progesterone.)  At U of M, the suggestion has been to infuse Taxotere and Cytoxin in four treatments every three weeks….about 12 weeks of chemo, followed by “endocrine” therapy (same as hormone therapy, but a “more accurate” term).  Notice U of M leaves out the Adrimycin.  Funny thing about Adrimycin…it has a nasty side effect of “potential heart damage”.  When Dr. S explained a potential chemo mix that included Adrimycin, it only decreases the rate of recurrence within five years by 2%.  What would you pick?  Take the drug with the potential of damaging your heart muscle, or, a 2% better chance of no recurrence of cancer in the next 5 years?   I have ten more years before Charlie graduates from High School.  Sigh……….

Of course, that intellectual dilemma takes me back to the question of “Stage”.  If truly a stage II cancer, perhaps a more aggressive approach will get me to the goal.  Maybe I’ll be lucky and not have the “side effect” of heart damage.  Then I think about the No 1 killer of women……of course, heart disease.

**Revision (6/15/09)  I need to add an updaste to this post.  From my first visit to U of M, I discovered that I misunderstood some information that was presented to me.  The Pathologists at U of M did indeed list my cancer as a Stage 2 cancer.  (I misunderstood information about the “grade” and “stage” of the cancer.)  Once I had made a second call to the nurse practioner who assists my oncologist, she patiently explained all relevant information to me not once, but twice.  This small experience goes to show you that even when you think you have fully understood everything, took notes, etc. there can still be misunderstandings.  It is SO IMPORTANT to ask questions, and don’t settle for an answer you do not understand!  It is your life and you deserve to be fully and completely informed!