Friday (June 12) was my six-month anniversary as a cancer survivor. I’m two thirds of the way through my Cancer treatments, Katie is officially potty-trained, and I can see a Cancer-Free Christmas from here with a bit of hair!
Things are going well and I anticipate being done with all Chemotherapy by July 8th. As of this past Wednesday, I have completed 8 of the 12 weekly Taxol treatments. I will begin radiation treatments at the end of July and the treatments will be everyday, Monday – Friday for 6 weeks. I should be done with the everything, except Herceptin (more about that later), the five years of Tamoxifen and reconstruction for a rousing 41st birthday celebration on September 11.
This round of Chemo has been much more tolerable than the previous "Red Devil". In fact, the steroids that they give me during the infusion to prevent an allergic reaction give me a great deal of energy; so basically, the night and day after my infusion I am typically tackling some project, re-organizing some remote corner of the house, jogging my entire three mile route and making some crazy to do list for the next day that does not get done. That level of energy, however, is short lived as Mike has to give me an injection of Neupogen on days 2 and 3 following chemo which works to keep my white cells blood up. That drug makes me feel achy and tired for a few days but it is tolerable. I did not take the Neupogen following my first dose of Taxol and the next week my white blood cells were 1.3 (normal range 4.5 – 11.0) and my absolute neutrophil count was 0.2 (normal range 2.0 – 7.5). Needless to say I did not have chemo that week. I have not had that issue since I started the Neupogen, so the drug seems rather effective at $246.50 a shot. While I’m going off on a tangent, this is absolutely unbelievable….I just logged into the web site to check my prescription insurance claims as I wanted to give the exact cost of Neupogen; and since January 1 my prescription claims for just stuff I get at the drug store, not including chemo or other drugs at the hospital are over $28,000.
Once my chemo brain subsides, I’m going to explain to the assholes who do not think that we need some kind of healthcare reform why people who do not have the income of Warren Buffet can’t afford to be sick without health insurance and why in a recent study conducted by Harvard found that 60% of all personal bankruptcies were a result of medical bills and 75% of those folks had health insurance! Okay, enough about the system, now, back to me……
The most stressful finding since my last posting has been the possibility of chemo induced cardiomyopathy (i.e. weakening of the heart muscle) a known side effect of the Red Devil. This is suspected because my baseline heart function was 60% before Red Devil and 52% after. The normal range is 55% to 45%. While I’m still in the normal range at 52% they are concerned because this was a drop from 60%. The VERY worst case scenario from all of this is that the heart muscle continues to weaken which results in congestive heart failure and I either get a heart transplant or die….now wouldn’t that be some shit…. I die from heart failure and not cancer. The more immediate issue is that it has postponed the drug called Herceptin. The original plan was to start Herceptin with the Taxol. Herceptin is a targeted therapy because it only attacks the cancer cells and is basically the “break through” drug for my type of cancer. But, unfortunately, a side effect of the drug is reduced heart function. So to make a long story short, my Oncologist decided that it would be best to give my heart a little break and hold off on the Herceptin. I also now have a freaking cardiologist. In the mean time, I had a repeat heart function test that came in at 51% (considered stable), been put on a low dose high blood pressure medicine (the theory is that it may protect the heart), and am scheduled for a cardiac MRI on July 2 to look at the heart muscle to see what, if anything, is going on.
Regarding my hair…My eyebrows and eye lashes are thinner and lighter but not completely gone. I also have some fine baby hairs coming in on top of my head. Mike swears it is really growing but I think it is just teasing me. It does, however, stay put when I roll the sticky lint brush over it.
I will say that some of the most interesting news is that I have apparently become a local Chatham County celebrity practically overnight. Back in April, Mike and his friend John walked a ridiculous amount of miles at the Wilmington Relay for Life in my honor and then the following weekend Mike walked a ridiculous amount of miles at the Siler City Relay for Life in my honor. He raised almost a thousand dollars for cancer research. In the meantime, a reporter from the Chatham News (a weekly paper) called about interviewing us. They did a short feature on my story which landed on the front page along with a picture of me and Mike (Katie was with Memaw and Pop Pop). The reporter, however, got some of the story incorrect and I had to ask for a correction. (Of course I would!). The next week after the Siler City Relay Walk, the paper plastered my bald head on the front page of the paper again. I guess bald headed women sell papers! The picture was taken during the opening ceremony. Mike walked the torch in from the City Limits…..Mike, Katie and I walked onto the track…..Mike handed me the torch and I walked ¼ of the track and handed it off to another cancer survivor. The torch was passed around the track to three other survivors and the last person lit the big flame. The article was about the about the Relay itself and ran concurrently with my requested correction. Here is the link to that article: http://www.thechathamnews.com/archives/May.7.09/ . The link to the first article was not available.
For those curious, the retraction I requested was based on breast cancer detection. I told the reporter my story, (short version: yearly gyno visit = dr. found nothing; found lump during self exam following month, mammogram following self lump detection resulted in diagnosis). He printed that I had initially had a mammogram that did not detect the lump during my yearly examine and.. I could not in good conscious allow people to read that thinking that mammograms don't work. Despite all the other mistakes (referring to Katie as Kathy, for example) the mammogram thing was the only correction I requested, simply from a public health education point of view. I mean, I do have an MPH in Health Behavior and Health Education and should probably use the graduate degree from time to time.
That's been the biggest excitement around here lately, except for, like I said, Katie's potty trained. She's such a big girl at only 29 months and I’m so proud of her! She even stays dry at night. Despite how unfortunate the circumstances seem, she always makes me feel like I have won the lottery! I’m so fortunate to have such a wonderful little girl.
Yesterday was the Susan G. Komen Walk/Run in Raleigh. It was a huge event (the largest road race in NC) and was a great experience. It was a bit overwhelming to see how many people have been touched by this disease and to see the passion people have to find a cure. With that, I'm not very good or comfortable asking for tax deductible donations (unless it is in support of other folks like those fleeing from the aftermath of a hurricane). But if you are so inclined and have the means you can click on the following link and type in my name which is Gail Robuck in case you were wondering about the marriage and the Fox/Robuck thing.
http://race.komennctriangle.org/site/TR/Race/General?pg=pfind&fr_id=1070
Much to my surprise one of my friends in all of her generosity and thoughtfulness made a surprise donation to me on Wednesday and it jump started my last minute fund raising efforts. I changed my goal from the standard $150 (the cost of one mammogram) to $1000. You can make donations to count for this year until June 30.
If you have already donated to Susan G. Komen, thank you in advance for supporting the foundation. From my personal experience, I feel that the Susan G Komen foundation does an excellent job locally disseminating the funds to under-served populations in this area and I feel quite certain that many of the treatment options and information available to me is a result of their advocacy and the national research programs they support. In fact, I'm currently participating in one study funded in part by them looking at racial disparities and survival rates and I will participate in a program funded by them for survivors when I'm finished with chemo and radiation.
Sunday, June 14, 2009
Monday, March 23, 2009
Two Month Update
It has been quite some time since my last blog posting (almost two months). I want to apologize to everyone who has been checking the website hoping for a new update. I truly appreciate everyone’s interest in my recovery, recuperation and overall well being. Believe me, my lack of updates in no way translates to any lack of appreciation for everyone’s support.
I’m not real sure why I have been procrastinating on posting an update but the following could be the case: 1) Maybe the “newness of the cancer” is wearing off and I’m already tired of thinking about it; 2) As time has past maybe I have felt overwhelmed with the task of summarizing everything that has happened or 3) Maybe my “chemo brain” makes it harder to put together coherent sentences. In any event, I’m determined to get this blog updated and my taxes to the accountant by my next chemo treatment.
In an effort to catch everyone up on the “goings on” I have broken the events of the last two months into the following topics (somewhat in chronological order). 1) Ancillary Node Resection; 2) Lymph Node Results and Staging Tests Results; 3) Fertility Preservation; 4) Permanent Port Placement; 5) First, Second and Third Chemotherapy Treatment of Adriamycin and Cytoxan
Ancillary Node Resection
As previously noted I had to undergo an ancillary node resection on Tuesday, January 20 to remove the lymph nodes under my left arm due to having 1 sentinel node and 1 node in the breast tissue positive for cancer. Things progressed much like the mastectomy following the surgery, except two days post surgery, I started having chills and fevers. I was put on oral antibiotics over the weekend but the chills and fevers continued. As a result, I was re-admitted to the hospital on Monday, January 26 and put on IV antibiotics. The next day I had surgery to “clean out” the infection (technically called surgical debridement). What I did not really know was that when the infection is “cleaned out” the incision is not closed up but rather left opened and packed with gauze and allowed to heal from the inside out. So what that meant was that someone (read: Mike) has to change the dressing and “pack the wound” with wet gauze at least two times a day until it healed. I mention this not to gross you out but to let you know that it has been over 52 days and the wound is still healing (chemo also slows down the healing process). Mike has diligently and thoughtfully taken care of this unforeseen bump in the road. He has changed this dressing over 100 times without a single complaint or hesitation and has only offered me words of encouragement when I get discouraged over the slow healing process. Dr. Mike has never missed a beat and I could have never wished for better care and attention.
In addition to Mike, my parents have been amazing. They have basically uprooted their coastal existence from Wilmington to stay with us for chunks of time to help out with the day to day chores that need to get done. They help with Katie, they do dishes, fix dinner, do laundry, straighten the house, go to the grocery store…they have made this daunting experience so much more bearable knowing that the little stuff that would otherwise go ignored or undone is being done. I truly don’t know what Mike, Katie and I would’ve done if they weren’t available and so willing to help on the level that they have.
As a result of the surgery, I had something called lymphatic cording in my left arm. I really don’t know what this is but basically I was only able to straighten my arm out about 75%. It was pretty painful. This, however, has since resolved itself with physical therapy. I would say that my range of motion is about 95% now and when it does hurt it just feels like a sore muscle.
Lymph Node Results and Staging Test (Bone Scan Chest and Adbominal CT Scan)
As Carrie mentioned previously, on the same day I was admitted to the hospital for the infection I also found out my test results from the ancillary resection and the staging scans. While the infection and another surgery was likely enough to send me off the deep end at that time, finding out that all of the lymph nodes (23 in total) that were removed the second time were NEGATIVE was wonderful, wonderful, wonderful news and helped me deal with the set-back. So from a clinical perspective, I had 2 out of 28 lymph nodes positive. The number of positive lymph nodes determines the need for radiation (local treatment). I’ve been told that 4 positive nodes = radiation treatment, but given my age, radiation will likely be recommended. This will occur after I finish chemo, likely in July. I will know more details once I meet with the radiation oncologist.
In addition, I also found out that day that my bone scan was negative and my liver CT scan was negative. They did see something irregular on my chest CT but I have been told not to worry about this as it did not look cancerous and it was most likely due to the current infection or the mastectomy. This was a great relief, because even though I tried to keep things in perspective during this time, it was hard not to think about the possibility that the cancer may had already spread all over my body and every little ache and pain was the cancer in my bones and every little cough was the cancer in my lungs.
So with all the test results in I finally had a HUGE sense of relief knowing exactly what I was dealing with.
Fertility Preservation
Mike and I were planning to have another baby in 2009. But once I heard the word cancer I knew that was likely not going to happen in 2009 or maybe ever given my age and the impact of the chemo drugs on fertility. After meeting with the fertility specialist, however, I discovered I could harvest my eggs and save them for a later date. My struggle, however, was that the process was not cheap and in the end I may not even have the opportunity to use the eggs.
Here is the deal: After I finish all of my treatments, I will need to take a drug called Tamoxifen for five years. The data on Tamoxifen shows that long term survival is better if you take the drug for five years versus two years. There is no data showing the impact of stopping and starting the drug for instances such as pregnancy (in other words, not remaining on the drug for five consecutive years). It is very clear to me that while it would be nice for Katie to have a brother or a sister, my primary goal is to stay alive for as long as I can for the child that I already have. So, if I harvest the eggs, I could have them implanted after I finish the Tamoxifen at the age of 45 or 46 when Mike and I are “old” and Katie is 7 (which seems like a big age difference for a sibling relationship). I could also use a surrogate, which is expensive as well. So with absolutely no answers or strategy for the second pregnancy dilemma or mental capacity to even attempt to sort through it, I decided to keep my options open and proceed with the fertility preservation. I also think it is my famous stubborn streak refusing to let cancer take anything or any options away from me.
So with all of that we started the fertility drugs on the day that I was admitted into the hospital for the infection. Starting the fertility drugs was planned, the infection was not. So once again, Mike steps up and without hesitation starts reconstituting, drawing up and injecting two to three drugs a night into my belly. As much as I am an information gatherer and control freak, I basically had no bandwidth for any more information and I was on auto pilot during this whole process, almost completely oblivious to what was going on. It was, basically, inject a bunch of really expensive drugs, go have an ultrasound every day at 7 AM to see how the eggs are growing, at some point undergo a procedure to collect the eggs, while they are collecting the eggs Mike makes his contribution, they put everything together and we have frozen embryos to use at a later date.
They collect 12 eggs on February 4th. Why 12? Because, as Carrie said, they’re eggs, of course there would be a dozen. Actually, they were hoping for 10 so 12 was not bad for 40 year old ovaries. In the end, we ended up with 8 frozen embryos or as they are affectionately called, Embies on February 7. No Octomom jokes allowed!
Permanent Port Placement
On February 10, I had a permanent (until I finish treatment) port inserted in my neck. This allows the nurses to give me my chemo infusions and draw blood with one needle stick. It also ensures they get access with every stick. Initially I was on the fence about getting the port as I have never really been afraid of needles or had problems giving blood and felt that I could endure the needle sticks required for treatment. But during a brief period while getting my staging scans, being admitted to the hospital for the infection and going through the fertility stuff I had multiple blood draws and IV insertions, with some requiring multiple sticks to gain access. Keep in mind this is all in my right hand / arm because for the rest of my life I cannot have needle sticks in my left hand /arm due to the risk of lymphedema (now that I have no more lymph nodes under my left arm, I have also been advised against manicures because of the high risk of infection at the cuticles, this is sad…we can take a moment of silence.).
This treachery and constant poking at my right arm, hand, veins caused what I now refer to as “Post Traumatic Needle Stick Syndrome”.
The port placement was done under conscience sedation. I was more painful afterwards than they prepared me for. They basically told me to take Tylenol for any “discomfort”, I discovered that they obviously use this term loosely). Luckily I had some left over Percocets to help with the pain for the next few days and I had my first chemo treatment the next day so I had other things to take my mind off of the port. In the end, I love my port and I can’t imagine going through this process without it. It is funny the things you begin to “love” when going through chemo treatments.
First, Second and Third Chemotherapy Treatment of Adriamycin and Cytoxan
Adriamycin is considered the “bad” chemo and I guess I get the Cytoxan to make the “bad” a little worse. Adriamycin is nicknamed “The Red Devil” because as the name would imply it is red. The stuff can actually be very damaging to the skin if it leaks out of the vein, but for some reason it seems like a good idea to put it inside of your body. It can also cause damage to the heart muscle. Cytoxan can cause serious damage to the bladder wall so it is important that I increase water consumption. While rare, it can also cause leukemia. In my case, I’m hopeful that these drugs will just be killing cancer cells.
I had my first of four treatments on February 11. I go every other week so my subsequent treatments were February 25 and March 11 (every other Wednesday). My last treatment of this stuff is coming up on Wednesday, March 25. I’ve been trying to think about how to describe how the treatments make me feel. There is not any one thing that I can point to that is all that bad. I think in general I just don’t feel like myself, which kind of sucks, because for the most part I liked myself before I started these chemo treatments.
Physically, the most significant change is my hair fell out. In preparation I had already cut and donated 12 inches of my hair in January to Locks of Love. Despite our best hopes, it began coming out in chunks the Sunday following the second treatment and I decided to shave it off with the clippers (Mike shaved his at the same time, so the supportive pink Mohawk he had been sporting became a thing of the past). I rocked the GI Jane look and just kept rubbing my head with one of those sticky lint brushes. It’s pretty much all about gone. Almost everyone who sees me says, “you have a nice shaped head”. And I say “yeah, it could be worse”. While I would rather have hair, especially my long hair because I really liked it, I guess I’m okay with the bald head. I mean I have to be because, frankly, what can I do about it? What is a bit overwhelming is that worst case I’m probably not going to be back to my baseline short hair look until December or January. While Mike shaved his head his hair is growing. It is possible that I may have hair growth during the next stage of chemo treatment which is 12 weeks (April – June) but I’m not counting on that. I’m planning that my hair will start growing again in August (1 – 2 months post all chemo).
Carrie and her friend Elizabeth took me wig shopping about a month ago and I purchased half of a blonde wig that we now affectionately refer to as Nicki. Basically, the wig doesn’t have hair on the top of the head (which was actually a lot cooler (temperature, not fashion) than the traditional full wig), so I need to wear a hat or bandana to cover the top. It’s long and straight and blonde. Carrie said it made me look like an Earth Mother, Mike named it Nicki, and my mother hates it. But I haven’t even really used it except to put it on Sheryl’s 6 month old baby and take pictures of a little Beyonce. I’ve basically decided not to wear a wig because it makes me feel like I’m being something that I’m not. In some strange way wearing a wig makes me feel more self conscience than my bald head - like I feel when I think I’m wearing too much make-up or I’m over accessorized with jewelry and stuff. I mean everyone who knows me would know the hair is fake and that I have a bald head – I would be such a poser.
As of right now, my eyebrows have hung in there and when I wear mascara, I apply it with the utmost of care.
Other than the hair, the only other physical set back is that I really just don’t have an appetite. I mean I just don’t sit around thinking that I sure would like to have a yummy burger with sautéed onions and mushrooms and provolone cheese with extra crispy French fries and a good glass of cabernet. In the days of trying to achieve the perfect size 0 or 2 this may seem like a good thing but in the end it pretty much sucks not wanting anything to eat. Not to mention that nothing at all seems appetizing, least of all Mike’s new juice concoctions.
My parents purchased a very nice juicer for Mike and me. I originally wanted a juicer last summer when we took our trip to Bonnaroo so that I would be able to concoct the perfect lime juice for the perfect Margarita (Mar-Gail-ita, I planned to call it). Now Mike uses our new juicer to make tasty, healthy concoctions of cucumber and celery. Not exactly my ideal use for the juicer, but he is convinced that we will all be healthier drinking kale, ginger, carrots and beets. I of course have been reading about nutrition and cancer and I certainly believe in the benefits of juicing and I know I should be drinking the concoctions but the thought of it right now just does not sit well with my chemo stomach. Basically I’m not drinking beets until they’re in my “Post Cancer, Post Chemo, Post Bullshit Beet Martini”…can I get an amen?
In general most of the physical well known side effects of chemo (i.e nausea and vomiting, low white blood cell counts etc.) seem to be managed quite successfully for me with other medications. Basically I get the cancer killing drugs and then I get drugs to counteract the side effects of those drugs and then there is another layer of drugs to counteract the side effects of the drugs that are counteracting the side effects. Make sense. As crazy as it sounds it does work.
I think the effects emotionally and mentally are far worse than the physical effects. Emotionally, I’ve never had issues with depression, but if what I feel from time to time is anything like depression then I certainly understand how debilitating the condition can be. Intuitively, I know I should not be sad or to put it another way, there is no acute situation that is making me sad. I’m someone that if something is not making me happy then I change it, but the overwhelming feeling of what I call “the black cloud” that seems to be all around and you can’t shake it off is too much out of my control for my taste. Luckily, exercise does make this a bit better for a few hours following the exercise. I’ve been able to walk and run some and my overall goal is to hopefully stay in enough shape to be able to run the Susan G. Komen 5K in Raleigh in mid-June.
Mentally, what I refer to as “chemo brain” often lets me down and I find myself forgetting what Mike just told me or asking the same question more than once. For me, this is very frustrating because I’ve always considered myself a pretty clear thinker and a pretty good multitasker. Having the muddy noggin is the most relevant description I can contrive with regard to not “feeling like myself”. I continue to remind myself that it’s not me it’s the drugs, the cancer, the overwhelming concept of my own mortality, that I shove to the back shelf…but then the real Gail feels like a cheat. I have never been willing to blame being out of control of my own emotions on any kind of crutch and I resent that now that cancer has decided to take over 2009, I resent that on some level it has taken over me, even if not the cancer, all of this crap that has come with it.
At the end of the day, after my emotional, mental roller coaster when I can climb into bed with Mike and Katie (yes, Katie is two and she still sleeps with us), I remember that underneath all of this, the lopsided chest, the lump in my neck (port), the bald head, I know the real Gail is still there. I remember that by the time Carrie’s new baby is born in September and of course by my birthday, I will have the bulk of this shit behind me and the real Gail will be back in full force and this shadow I have walking around with me right now will be a vague apparition, a memory…and I’ll toast to that memory with my Beet Juice Martini.
I’m not real sure why I have been procrastinating on posting an update but the following could be the case: 1) Maybe the “newness of the cancer” is wearing off and I’m already tired of thinking about it; 2) As time has past maybe I have felt overwhelmed with the task of summarizing everything that has happened or 3) Maybe my “chemo brain” makes it harder to put together coherent sentences. In any event, I’m determined to get this blog updated and my taxes to the accountant by my next chemo treatment.
In an effort to catch everyone up on the “goings on” I have broken the events of the last two months into the following topics (somewhat in chronological order). 1) Ancillary Node Resection; 2) Lymph Node Results and Staging Tests Results; 3) Fertility Preservation; 4) Permanent Port Placement; 5) First, Second and Third Chemotherapy Treatment of Adriamycin and Cytoxan
Ancillary Node Resection
As previously noted I had to undergo an ancillary node resection on Tuesday, January 20 to remove the lymph nodes under my left arm due to having 1 sentinel node and 1 node in the breast tissue positive for cancer. Things progressed much like the mastectomy following the surgery, except two days post surgery, I started having chills and fevers. I was put on oral antibiotics over the weekend but the chills and fevers continued. As a result, I was re-admitted to the hospital on Monday, January 26 and put on IV antibiotics. The next day I had surgery to “clean out” the infection (technically called surgical debridement). What I did not really know was that when the infection is “cleaned out” the incision is not closed up but rather left opened and packed with gauze and allowed to heal from the inside out. So what that meant was that someone (read: Mike) has to change the dressing and “pack the wound” with wet gauze at least two times a day until it healed. I mention this not to gross you out but to let you know that it has been over 52 days and the wound is still healing (chemo also slows down the healing process). Mike has diligently and thoughtfully taken care of this unforeseen bump in the road. He has changed this dressing over 100 times without a single complaint or hesitation and has only offered me words of encouragement when I get discouraged over the slow healing process. Dr. Mike has never missed a beat and I could have never wished for better care and attention.
In addition to Mike, my parents have been amazing. They have basically uprooted their coastal existence from Wilmington to stay with us for chunks of time to help out with the day to day chores that need to get done. They help with Katie, they do dishes, fix dinner, do laundry, straighten the house, go to the grocery store…they have made this daunting experience so much more bearable knowing that the little stuff that would otherwise go ignored or undone is being done. I truly don’t know what Mike, Katie and I would’ve done if they weren’t available and so willing to help on the level that they have.
As a result of the surgery, I had something called lymphatic cording in my left arm. I really don’t know what this is but basically I was only able to straighten my arm out about 75%. It was pretty painful. This, however, has since resolved itself with physical therapy. I would say that my range of motion is about 95% now and when it does hurt it just feels like a sore muscle.
Lymph Node Results and Staging Test (Bone Scan Chest and Adbominal CT Scan)
As Carrie mentioned previously, on the same day I was admitted to the hospital for the infection I also found out my test results from the ancillary resection and the staging scans. While the infection and another surgery was likely enough to send me off the deep end at that time, finding out that all of the lymph nodes (23 in total) that were removed the second time were NEGATIVE was wonderful, wonderful, wonderful news and helped me deal with the set-back. So from a clinical perspective, I had 2 out of 28 lymph nodes positive. The number of positive lymph nodes determines the need for radiation (local treatment). I’ve been told that 4 positive nodes = radiation treatment, but given my age, radiation will likely be recommended. This will occur after I finish chemo, likely in July. I will know more details once I meet with the radiation oncologist.
In addition, I also found out that day that my bone scan was negative and my liver CT scan was negative. They did see something irregular on my chest CT but I have been told not to worry about this as it did not look cancerous and it was most likely due to the current infection or the mastectomy. This was a great relief, because even though I tried to keep things in perspective during this time, it was hard not to think about the possibility that the cancer may had already spread all over my body and every little ache and pain was the cancer in my bones and every little cough was the cancer in my lungs.
So with all the test results in I finally had a HUGE sense of relief knowing exactly what I was dealing with.
Fertility Preservation
Mike and I were planning to have another baby in 2009. But once I heard the word cancer I knew that was likely not going to happen in 2009 or maybe ever given my age and the impact of the chemo drugs on fertility. After meeting with the fertility specialist, however, I discovered I could harvest my eggs and save them for a later date. My struggle, however, was that the process was not cheap and in the end I may not even have the opportunity to use the eggs.
Here is the deal: After I finish all of my treatments, I will need to take a drug called Tamoxifen for five years. The data on Tamoxifen shows that long term survival is better if you take the drug for five years versus two years. There is no data showing the impact of stopping and starting the drug for instances such as pregnancy (in other words, not remaining on the drug for five consecutive years). It is very clear to me that while it would be nice for Katie to have a brother or a sister, my primary goal is to stay alive for as long as I can for the child that I already have. So, if I harvest the eggs, I could have them implanted after I finish the Tamoxifen at the age of 45 or 46 when Mike and I are “old” and Katie is 7 (which seems like a big age difference for a sibling relationship). I could also use a surrogate, which is expensive as well. So with absolutely no answers or strategy for the second pregnancy dilemma or mental capacity to even attempt to sort through it, I decided to keep my options open and proceed with the fertility preservation. I also think it is my famous stubborn streak refusing to let cancer take anything or any options away from me.
So with all of that we started the fertility drugs on the day that I was admitted into the hospital for the infection. Starting the fertility drugs was planned, the infection was not. So once again, Mike steps up and without hesitation starts reconstituting, drawing up and injecting two to three drugs a night into my belly. As much as I am an information gatherer and control freak, I basically had no bandwidth for any more information and I was on auto pilot during this whole process, almost completely oblivious to what was going on. It was, basically, inject a bunch of really expensive drugs, go have an ultrasound every day at 7 AM to see how the eggs are growing, at some point undergo a procedure to collect the eggs, while they are collecting the eggs Mike makes his contribution, they put everything together and we have frozen embryos to use at a later date.
They collect 12 eggs on February 4th. Why 12? Because, as Carrie said, they’re eggs, of course there would be a dozen. Actually, they were hoping for 10 so 12 was not bad for 40 year old ovaries. In the end, we ended up with 8 frozen embryos or as they are affectionately called, Embies on February 7. No Octomom jokes allowed!
Permanent Port Placement
On February 10, I had a permanent (until I finish treatment) port inserted in my neck. This allows the nurses to give me my chemo infusions and draw blood with one needle stick. It also ensures they get access with every stick. Initially I was on the fence about getting the port as I have never really been afraid of needles or had problems giving blood and felt that I could endure the needle sticks required for treatment. But during a brief period while getting my staging scans, being admitted to the hospital for the infection and going through the fertility stuff I had multiple blood draws and IV insertions, with some requiring multiple sticks to gain access. Keep in mind this is all in my right hand / arm because for the rest of my life I cannot have needle sticks in my left hand /arm due to the risk of lymphedema (now that I have no more lymph nodes under my left arm, I have also been advised against manicures because of the high risk of infection at the cuticles, this is sad…we can take a moment of silence.).
This treachery and constant poking at my right arm, hand, veins caused what I now refer to as “Post Traumatic Needle Stick Syndrome”.
The port placement was done under conscience sedation. I was more painful afterwards than they prepared me for. They basically told me to take Tylenol for any “discomfort”, I discovered that they obviously use this term loosely). Luckily I had some left over Percocets to help with the pain for the next few days and I had my first chemo treatment the next day so I had other things to take my mind off of the port. In the end, I love my port and I can’t imagine going through this process without it. It is funny the things you begin to “love” when going through chemo treatments.
First, Second and Third Chemotherapy Treatment of Adriamycin and Cytoxan
Adriamycin is considered the “bad” chemo and I guess I get the Cytoxan to make the “bad” a little worse. Adriamycin is nicknamed “The Red Devil” because as the name would imply it is red. The stuff can actually be very damaging to the skin if it leaks out of the vein, but for some reason it seems like a good idea to put it inside of your body. It can also cause damage to the heart muscle. Cytoxan can cause serious damage to the bladder wall so it is important that I increase water consumption. While rare, it can also cause leukemia. In my case, I’m hopeful that these drugs will just be killing cancer cells.
I had my first of four treatments on February 11. I go every other week so my subsequent treatments were February 25 and March 11 (every other Wednesday). My last treatment of this stuff is coming up on Wednesday, March 25. I’ve been trying to think about how to describe how the treatments make me feel. There is not any one thing that I can point to that is all that bad. I think in general I just don’t feel like myself, which kind of sucks, because for the most part I liked myself before I started these chemo treatments.
Physically, the most significant change is my hair fell out. In preparation I had already cut and donated 12 inches of my hair in January to Locks of Love. Despite our best hopes, it began coming out in chunks the Sunday following the second treatment and I decided to shave it off with the clippers (Mike shaved his at the same time, so the supportive pink Mohawk he had been sporting became a thing of the past). I rocked the GI Jane look and just kept rubbing my head with one of those sticky lint brushes. It’s pretty much all about gone. Almost everyone who sees me says, “you have a nice shaped head”. And I say “yeah, it could be worse”. While I would rather have hair, especially my long hair because I really liked it, I guess I’m okay with the bald head. I mean I have to be because, frankly, what can I do about it? What is a bit overwhelming is that worst case I’m probably not going to be back to my baseline short hair look until December or January. While Mike shaved his head his hair is growing. It is possible that I may have hair growth during the next stage of chemo treatment which is 12 weeks (April – June) but I’m not counting on that. I’m planning that my hair will start growing again in August (1 – 2 months post all chemo).
Carrie and her friend Elizabeth took me wig shopping about a month ago and I purchased half of a blonde wig that we now affectionately refer to as Nicki. Basically, the wig doesn’t have hair on the top of the head (which was actually a lot cooler (temperature, not fashion) than the traditional full wig), so I need to wear a hat or bandana to cover the top. It’s long and straight and blonde. Carrie said it made me look like an Earth Mother, Mike named it Nicki, and my mother hates it. But I haven’t even really used it except to put it on Sheryl’s 6 month old baby and take pictures of a little Beyonce. I’ve basically decided not to wear a wig because it makes me feel like I’m being something that I’m not. In some strange way wearing a wig makes me feel more self conscience than my bald head - like I feel when I think I’m wearing too much make-up or I’m over accessorized with jewelry and stuff. I mean everyone who knows me would know the hair is fake and that I have a bald head – I would be such a poser.
As of right now, my eyebrows have hung in there and when I wear mascara, I apply it with the utmost of care.
Other than the hair, the only other physical set back is that I really just don’t have an appetite. I mean I just don’t sit around thinking that I sure would like to have a yummy burger with sautéed onions and mushrooms and provolone cheese with extra crispy French fries and a good glass of cabernet. In the days of trying to achieve the perfect size 0 or 2 this may seem like a good thing but in the end it pretty much sucks not wanting anything to eat. Not to mention that nothing at all seems appetizing, least of all Mike’s new juice concoctions.
My parents purchased a very nice juicer for Mike and me. I originally wanted a juicer last summer when we took our trip to Bonnaroo so that I would be able to concoct the perfect lime juice for the perfect Margarita (Mar-Gail-ita, I planned to call it). Now Mike uses our new juicer to make tasty, healthy concoctions of cucumber and celery. Not exactly my ideal use for the juicer, but he is convinced that we will all be healthier drinking kale, ginger, carrots and beets. I of course have been reading about nutrition and cancer and I certainly believe in the benefits of juicing and I know I should be drinking the concoctions but the thought of it right now just does not sit well with my chemo stomach. Basically I’m not drinking beets until they’re in my “Post Cancer, Post Chemo, Post Bullshit Beet Martini”…can I get an amen?
In general most of the physical well known side effects of chemo (i.e nausea and vomiting, low white blood cell counts etc.) seem to be managed quite successfully for me with other medications. Basically I get the cancer killing drugs and then I get drugs to counteract the side effects of those drugs and then there is another layer of drugs to counteract the side effects of the drugs that are counteracting the side effects. Make sense. As crazy as it sounds it does work.
I think the effects emotionally and mentally are far worse than the physical effects. Emotionally, I’ve never had issues with depression, but if what I feel from time to time is anything like depression then I certainly understand how debilitating the condition can be. Intuitively, I know I should not be sad or to put it another way, there is no acute situation that is making me sad. I’m someone that if something is not making me happy then I change it, but the overwhelming feeling of what I call “the black cloud” that seems to be all around and you can’t shake it off is too much out of my control for my taste. Luckily, exercise does make this a bit better for a few hours following the exercise. I’ve been able to walk and run some and my overall goal is to hopefully stay in enough shape to be able to run the Susan G. Komen 5K in Raleigh in mid-June.
Mentally, what I refer to as “chemo brain” often lets me down and I find myself forgetting what Mike just told me or asking the same question more than once. For me, this is very frustrating because I’ve always considered myself a pretty clear thinker and a pretty good multitasker. Having the muddy noggin is the most relevant description I can contrive with regard to not “feeling like myself”. I continue to remind myself that it’s not me it’s the drugs, the cancer, the overwhelming concept of my own mortality, that I shove to the back shelf…but then the real Gail feels like a cheat. I have never been willing to blame being out of control of my own emotions on any kind of crutch and I resent that now that cancer has decided to take over 2009, I resent that on some level it has taken over me, even if not the cancer, all of this crap that has come with it.
At the end of the day, after my emotional, mental roller coaster when I can climb into bed with Mike and Katie (yes, Katie is two and she still sleeps with us), I remember that underneath all of this, the lopsided chest, the lump in my neck (port), the bald head, I know the real Gail is still there. I remember that by the time Carrie’s new baby is born in September and of course by my birthday, I will have the bulk of this shit behind me and the real Gail will be back in full force and this shadow I have walking around with me right now will be a vague apparition, a memory…and I’ll toast to that memory with my Beet Juice Martini.
Wednesday, January 28, 2009
A Quick Update from Carrie
Hello everyone!
So, Gail's surgery last Tuesday to remove the nodes went well. All of the Nodes were clear (YAY!!!).
In other news, she developed an infection at the surgical site that has not responded as well as hoped to the oral antibiotics. They put Gail back in the hospital Monday afternoon for IV antibiotics and on Tuesday she had another surgery to clean out the infection.
They have not said what type of infection it is specifically. Perhaps they will pop up with that information at a later date.
Gail will go home from the hospital today.
In other, better than infection news, her Bone and Chest/Abdomenal CT scans were all clear. There was one little spot that showed up on the chest scan, but they are saying that the spot either represents the scarred area from her recent surgeries or it could have something to do with her Thyroid. In any event, they have assured us that it is nothing to worry about (finally, something)!
We have been getting good news lately...hopefully it will continue.
Coming up, Gail has an appointment with her fertility specialist and Medical Oncologist. From these visits she should have an update on the fertility preservation and when the anticipated start time for Chemo will be.
Thanks to everyone for all of their help and support.
Carrie
So, Gail's surgery last Tuesday to remove the nodes went well. All of the Nodes were clear (YAY!!!).
In other news, she developed an infection at the surgical site that has not responded as well as hoped to the oral antibiotics. They put Gail back in the hospital Monday afternoon for IV antibiotics and on Tuesday
They have not said what type of infection it is specifically. Perhaps they will pop up with that information at a later date.
Gail will go home from the hospital today.
In other, better than infection news, her Bone and Chest/Abdomenal CT scans were all clear. There was one little spot that showed up on the chest scan, but they are saying that the spot either represents the scarred area from her recent surgeries or it could have something to do with her Thyroid. In any event, they have assured us that it is nothing to worry about (finally, something)!
We have been getting good news lately...hopefully it will continue.
Coming up, Gail has an appointment with her fertility specialist and Medical Oncologist. From these visits she should have an update on the fertility preservation and when the anticipated start time for Chemo will be.
Thanks to everyone for all of their help and support.
Carrie
Friday, January 16, 2009
Pathology "check"
I’ve realize that I’m not very good at the “real-time” updating of this blog. It is hard to explain, but every time I receive news from the doctor it takes a few days to write about it. Immediately after I just don’t want to think or talk about it, the next day I’m in information seeking mode and then the next day I seem to be able to think about what it means for and to me. So with that here is the belated update from the three doctors visits on Wednesday, January 14 (i.e. Surgical follow-up visit including pathology report, Medical Oncology Visit and Fertility Preservation Visit).
Mike’s Dad and Beverly stopped by for a visit and brought a plate of goodies.
Carrie and my girlfriends organized a "game afternoon" where everyone (Carrie, Devonn, Randy, Lisa, Ella, Armide, Laura and Alyssa) came out to our house with snacks, games, DVDs and magazines and we all hung out, played games and ate my mama's wonderful Thanksgiving dinner (complete with my favorite Oyster dressing...mmmm!). Randy also brought yummy burritos. Lisa came with Chicken Cacciatore which is in the freezer and I can’t wait to eat. Mike’s Mom and Lloyd also stopped by the Chicken Pie in hand which is Mike’s favorite. Thanks you all so much for being so supportive and helping me pass the time.
Love,
Gail
I’ve realize that I’m not very good at the “real-time” updating of this blog. It is hard to explain, but every time I receive news from the doctor it takes a few days to write about it. Immediately after I just don’t want to think or talk about it, the next day I’m in information seeking mode and then the next day I seem to be able to think about what it means for and to me. So with that here is the belated update from the three doctors visits on Wednesday, January 14 (i.e. Surgical follow-up visit including pathology report, Medical Oncology Visit and Fertility Preservation Visit).
- Drains from surgery are out. The drains were a minor inconvenience and not at all as bad as described by some folks on Internet discussion boards, but none the less I am glad they were removed.
- Of the 7.5 cm mass in the breast found by MRI, 2 cm was Invasive Ductal Carcinoma (bad cancer) and the remaining was Ductal Carcinoma In Situ (“good“-stay-put-cancer). This was very good news.
- Tumor had Estrogen and Progesterone Positive Receptors. This is good news as there are drug therapies that significantly reduce the risk of recurrence with positive receptors.
- Tumor is Her2/neu positive (3+). From what I can tell this is good and bad news. Bad news, because tumors with this characteristic are more aggressive. Good news, because there are drug therapies that are very efficacious in shutting down the production of these cancer cells and thus reducing the risk of recurrence.
- 3 sentinel nodes were removed during surgery and 2 lymph nodes were identified in the breast tissue during the pathology process. 1 sentinel node and 1 lymph node have cancer in them. This is bad news as it means the cancer is on the move. To put this in perspective, I recall something that I read - no one ever dies of breast cancer in the breast, people die of breast cancer that has moved to other areas of the body (i.e. liver, brain, bones etc). All of this means I have to have another surgery called Ancillary Node Resection.
- Surgery is schedule for Tuesday, Jan 20th. Ancillary Node Resection is basically the removal of lymph nodes under my arm. This is also inauguration day, so out with Bush and out with cancer! The two seem synonymous don‘t they? I’m not at all crazy about another surgery and recovery period as I thought I already “checked” surgery off the list. I feel a bit defeated, but I know it is certainly too soon in this process to feel defeated, so I know I have to shake this off. This will be another overnight hospital stay and I‘ve been warned by the surgeon that the recovery for this surgery is often more difficult than the mastectomy recovery. Speaking of the mastectomy and sentinel node recovery, 1 week post surgery, I can say the recovery was not that bad, with the help of pain medication. The incision site is really quite impressive, Mike and I just measured it and it is 10 inches. Not real sure how a plastic surgeon is going to make this “look good” but I’ve been told that they can. Best of all my range of motion in my left arm is about 80%. Unfortunately, I still can’t lift Katie but I‘m still able to get plenty of hugs and kisses. It is amazing how insightful a two year old can be, she is very aware that Mommy has a “boo boo” and is acting completely appropriate.
- I am negative for the BRCA gene mutation. This is good news.
Next Steps:
- Pathology on Nodes due back Jan 28th during post surgical follow-up.
- Chemo to start 3 - 6 weeks after surgery. I met with Dr. Dees (Medical Oncologist) after my meeting with the surgeon to discuss "What's next" given the Pathology results. She has suggested an aggressive adjuvant treatment regimen given my age and other factors. This regimen will not change regardless of the pathology results of the nodes. She used words like "early stage" and "curable" which I found to be very comforting. The treatment regime is about 1 year followed by 5 years of hormone therapy. I’ve also been approached about an international clinical trial, called ALTTO, but I need to consult all of the medical and statistical professionals that I know before I make any decision about the trial.
- Radiation Treatment is still uncertain and will be based on the node pathology.
- Fertility Preservation is a bit up in the air for me for reasons I will write about later. We actually ran out of time on Wednesday and we did not have much time to spend with that doctor.
- Chest and Abdominal CT scan and Bone scan are still needed for what I hope are just baseline negative results. The doctor does not anticipate finding anything (i.e. cancer that has spread to any of these area) but I will still not sleep soundly until all the data are in. These will be done next Friday, Jan 23 and should have results no later than the following Monday, Jan 26.
- Heart MUGA , scheduled for Jan 26, is also needed for baseline results as two of the chemo drugs have a slight risk (2%) of causing heart damage.
Since the last posting, despite the surgery, recovery and doctors visits, I have managed to keep pretty busy with fun stuff and lots and lots of support.
My parents came up the day before surgery and stayed several days to help out around the house. In addition to Mama and Daddy, Mike, Mike’s Mom Vicki, my brother Roy and cousin Carrie were at the hospital during the surgery and Randy and Karen paid me visit after I was out of recovery Thank also go out to Gina for hooking me up with the finest person to put me to sleep.Mike's sister Debbie took care of Katie the night of surgery and the day of surgery and also brought a delicious dinner my first night home.
Mike’s Dad and Beverly stopped by for a visit and brought a plate of goodies.
Carrie and my girlfriends organized a "game afternoon" where everyone (Carrie, Devonn, Randy, Lisa, Ella, Armide, Laura and Alyssa) came out to our house with snacks, games, DVDs and magazines and we all hung out, played games and ate my mama's wonderful Thanksgiving dinner (complete with my favorite Oyster dressing...mmmm!). Randy also brought yummy burritos. Lisa came with Chicken Cacciatore which is in the freezer and I can’t wait to eat. Mike’s Mom and Lloyd also stopped by the Chicken Pie in hand which is Mike’s favorite. Thanks you all so much for being so supportive and helping me pass the time.
I received flowers from my brother Roy, his wife Paula and son Charlie, which was such a pleasant surprise.
Monday, Mike and I took in the new Clint Eastwood movie and on Tuesday, Carrie organized people from my office to get together for lunch. Mike and I met up with everyone at TGI-Fridays near the office. Kate, Elisa, Katherine, Marlo, Dexter, Crystal, Latrice, Gaye, Diane and Carrie - Thanks for coming out to lunch on Tuesday it was really great to see everyone. And congratulation to Dexter, whose wife just gave birth to a new baby boy.Wednesday was the big day at the doctor and Thursday we came down to the beach with Mama and Daddy and will be here until Sunday.
As always, thanks to everyone for all of your love and support and cards and gifts! I hope I am one day able to convey to all of you how much I appreciate all of your help and support how important all of you are to me and Mike and Katie.Love,
Gail
Friday, January 9, 2009
Surgery - "check"
Carrie here -
Okay so, Gail's surgery yesterday went very well. They injected her with the dye (it shows the doctor which nodes drain first so that they can take those specifically for pathology, as opposed to taking them all, or several, because when that is done there is a very high risk of Lymphedema) at around 11 am, they took her back for surgery close to 2pm.
They called us back right around 4 to see the surgeon. He was very happy with the surgery overall. The left breast was removed down to the pectoral muscle (none of the muscle had to be taken). I asked whether or not he was able to see the mass (I was hoping for an eyeball quasi-diagnosis) but he informed me that, no, he didn't see it, nor had he wanted to. He wanted to (and did) remove the breast with a good layer of fat all the way around the mass - which is really good.
He said she did great in the surgery and was in recovery. He said we would be able to see her in about an hour and a half.
About 45 minutes later, Mike and Gail's friend Gina (the one that helped Gail get in with this doctor) came out to let us know that she had peeked in on Gail and she was waking up. Gina went ahead and took Mike back to see her. The rest of us commoners had to wait the full allotted time.
About 45 minutes after that, we saw them wheeling Gail by on her gurney and she looked great! She was awake and alert and seemed to be feeling well (considering). It took about 10 minutes to get her settled in her room and then we were able to come and go in her room at will.
Her parents, her brother, Mike's mom, Mike and I were there. Also, her friend Randy and his daughter Karen stopped by.
They brought her some clear food and she slurped back the chicken broth with conviction. Her dad and Mike went in search of more.
She should be going home this morning. I will be going out to their house this afternoon and taking some Cosmic Cantina Burritos.
We will get the result of the Pathology next Wednesday so I imagine the next posting will be next Thursday.
Carrie
Okay so, Gail's surgery yesterday went very well. They injected her with the dye (it shows the doctor which nodes drain first so that they can take those specifically for pathology, as opposed to taking them all, or several, because when that is done there is a very high risk of Lymphedema
They called us back right around 4 to see the surgeon. He was very happy with the surgery overall. The left breast was removed down to the pectoral muscle (none of the muscle had to be taken). I asked whether or not he was able to see the mass (I was hoping for an eyeball quasi-diagnosis) but he informed me that, no, he didn't see it, nor had he wanted to. He wanted to (and did) remove the breast with a good layer of fat all the way around the mass - which is really good.
He said she did great in the surgery and was in recovery. He said we would be able to see her in about an hour and a half.
About 45 minutes later, Mike and Gail's friend Gina (the one that helped Gail get in with this doctor) came out to let us know that she had peeked in on Gail and she was waking up. Gina went ahead and took Mike back to see her. The rest of us commoners had to wait the full allotted time.
About 45 minutes after that, we saw them wheeling Gail by on her gurney and she looked great! She was awake and alert and seemed to be feeling well (considering). It took about 10 minutes to get her settled in her room and then we were able to come and go in her room at will.
Her parents, her brother, Mike's mom, Mike and I were there. Also, her friend Randy and his daughter Karen stopped by.
They brought her some clear food and she slurped back the chicken broth with conviction. Her dad and Mike went in search of more.
She should be going home this morning. I will be going out to their house this afternoon and taking some Cosmic Cantina Burritos.
We will get the result of the Pathology next Wednesday so I imagine the next posting will be next Thursday.
Carrie
Tuesday, January 6, 2009
The Final Plan so far……
I met with my new surgeon on Monday, the 5th and we discussed the findings of the MRI. Basically he is unable to say with any degree of certainty what makes up the 7.5 cm mass in my left breast (invasive carcinoma = bad; in situ carcinoma = good for cancer; or something else = good, probably fibrosis tissue). This is somewhat reassuring because he did say that with some scans he can tell right away that it is cancer, but to him, my scans do not seem conclusive one way or another.
As he pointed out, the money is on the sentinel node biopsy which we cannot determine until surgery.
I met with my Medical Oncologist (Dr. Dees) today and I love her. She concurred with the surgeon (i.e. no pre op chemo required). So on Thursday, January 8 the surgeon will remove my left breast completely. It is likely an overnight stay at UNC hospital.
I will return to the surgeons office the following Wednesday (January 14) to review the Pathology reports from the surgery. I will also meet with the Medical Oncologist on Wednesday to determine a plan for systemic treatment. All of this could require additional surgery, chemotherapy, and / or radiation therapy. I will also continue the fertility preservation on that day as well.
So, the good news is that I am merely 8 days away from getting a good bit of information about my treatment plan. But the bad news is that I also have 8 days to wait. So with that, any distractions, visitations, get to gathers to pass the time will be greatly appreciated.
Though I may not be posting updates regularly over the next week or so, Carrie will be helping me out and keeping all of you up to date on my progress.
Again, thanks to everyone for all of your love and support.
Gail
I met with my new surgeon on Monday, the 5th and we discussed the findings of the MRI. Basically he is unable to say with any degree of certainty what makes up the 7.5 cm mass in my left breast (invasive carcinoma = bad; in situ carcinoma = good for cancer; or something else = good, probably fibrosis tissue). This is somewhat reassuring because he did say that with some scans he can tell right away that it is cancer, but to him, my scans do not seem conclusive one way or another.
As he pointed out, the money is on the sentinel node biopsy which we cannot determine until surgery.
I met with my Medical Oncologist (Dr. Dees) today and I love her. She concurred with the surgeon (i.e. no pre op chemo required). So on Thursday, January 8 the surgeon will remove my left breast completely. It is likely an overnight stay at UNC hospital.
I will return to the surgeons office the following Wednesday (January 14) to review the Pathology reports from the surgery. I will also meet with the Medical Oncologist on Wednesday to determine a plan for systemic treatment. All of this could require additional surgery, chemotherapy, and / or radiation therapy. I will also continue the fertility preservation on that day as well.
So, the good news is that I am merely 8 days away from getting a good bit of information about my treatment plan. But the bad news is that I also have 8 days to wait. So with that, any distractions, visitations, get to gathers to pass the time will be greatly appreciated.
Though I may not be posting updates regularly over the next week or so, Carrie will be helping me out and keeping all of you up to date on my progress.
Again, thanks to everyone for all of your love and support.
Gail
Tuesday, December 30, 2008
The Plan - Part II
This has been quite the week for me and the previous plans I posted here have since changed. I wanted to take this opportunity make an update to The Plan.
I spent most of last week putting down my cancer-inspired reading and in between doctor appointments really just enjoying the holidays with the family.
Last Monday (December 22), as you all know from my previous posting, I had an appointment with a fertility preservation specialist, because due to my age and the upcoming chemotherapy, without the fertility preservation, I might not have the option to give Katie a little brother or sister as was originally in the plan for 2009. The meeting with the specialist went well and was very informative; the outcome of which was the following:
3) Once the eggs are harvested, Mike will contribute to the cause and the eggs will be fertilized and frozen should we decide to use them later
4) If we decided to utilize the fertilized eggs down the road, they would be implanted via In Vitro Fertilization
Note: this is actually very comforting knowing that I can "freeze" my biological clock without taking away any options for future babies.
Also on Monday, I continued to inquire about my surgeon at UNC. My friend, Gina, who in an anesthetist at UNC asked around about the surgeon I had been assigned and we discovered that she does not perform many surgeries. It appears she is a part time administrator in the School of Medicine and performs surgery from time to time to keep her skills up to date. My preference, however, is to have a surgeon that performs surgeries all day, everyday - someone who has a lot of practice. I have no doubt that my assigned surgeon would do a fine job, my decision to choose a different one was one based solely on my own peace of mind.
The doctor I have chosen, as it turns out, was the surgeon for a few members of Mike's family (for other oncology related conditions) all of whom had glowing things to say about him. He was also recommended by a friend of a friend who had breast cancer. The downside of this is that he will be out of the office until after the first of the year and only holds clinic on Wednesday and Thursday each week. Based on this the earliest I could get in to see him would be the 8th of January. My friend Gina was able to schmooze my way in to get an appointment on the 5th of January which is his first day back in the office. So, needless to say, I will not be having the Lumpectomy and Node Biopsy on the 29th as was in The Plan - Part I.
On Tuesday (December 23), I went for my scheduled MRI. This was a bit more stressful than I had imagined but I got through it with Mike holding my hand while he took a nap (if only I could have fallen to sleep while I laid perfectly still for 25 minutes). Then Mike and I went to Katie's daycare to enjoy a few minutes of watching Katie and her friends with Santa Claus. At around 2pm our available friends and family joined us at our house in Silk Hope and Mike and I were married. He's officially no longer the "Baby Daddy" :)
As you can tell, I have had lots of things to be grateful for and I had put the Cancer thoughts on the furthest back burner.
On Wednesday (December 24), UNC called with the results of the MRI. They conducted the MRI to get a better image of the tumor than they got from the Mammogram. They wanted to be able to better determine the actual size of the tumor. They informed me during my visit at UNC last Wednesday that they estimated it at 1.8 cm based on the Mammogram, however, they cautioned me that the Mammogram doesn't always give a good concept of the size - hence the MRI. They also cautioned that the MRI is very sensitive and may pick up false positives which may require future biopsy. I actually anticipated them coming back and telling me that they found other suspicious areas, perhaps in the right breast or that the tumor was larger than 1.8 cm, maybe 3.0 cm, I was not, however, prepared for them to tell me that it was actually more than 300% larger than their first estimate.
The tumor is actually 7.5 cm (roughly the size of a lemon). Since the size of the tumor is a primary component for staging, I saw my 5 year survival rate plummet. In addition, the option for lumpectomy was now off the table. On a positive note, a few lymph nodes appeared enlarged, but did not show any evidence of disease. In addition, there were no additional “areas of concern” in the left or right breast. I mean I can’t imagine there is any room in the left for anything else to be going on.
So - my new plan is to meet with my new surgeon on January 5 as well as a plastic surgeon on the same day to discuss options for reconstruction. On January 6, I go back to the fertility preservation MD to start that process. I’ll probably meet with the medical oncologist prior to surgery to ensure that they are in agreement with the surgical plan and that I do not need to receive chemotherapy prior to the surgery. I’m also working on scheduling my second opinion appointment at Duke.
While the MRI results were not good news, I do have so many reasons to be thankful. Just to name a few, I have an incredible support group of family and friends, I have health insurance, I live in close proximity to two major Cancer Centers, I have a job with sick and vacation time and short and long term disability insurance.
I want everyone to know how much I appreciate their well wishes and prayers.
Also - Adriana, Armide, Lisa, Vicky, Alyssa, Randy, Karen, Monty, Katherine, Sandi, Valentina, Dee, Jasmin, Carrie and DeVonn - Thank you so much for coming out to celebrate with me on Monday of last week. It was so thoughtful of everyone who organized that get together and for all of you who had the time to join us...I had a fantastic time and I will enjoy reading all of your notes in my book.
I also want to thank Debbie, Autumn, Cade, Haley, Richard, Beverly, Armide, Vicky, Adrianna, Carrie and DeVonn who all swung into action to make our wedding on Tuesday afternoon so special and sweet. But most of all I want to thank Mike who for better or worse has been and will be the best man I have ever married. :)
Happy New Year!
Love - Gail
This has been quite the week for me and the previous plans I posted here have since changed. I wanted to take this opportunity make an update to The Plan.
I spent most of last week putting down my cancer-inspired reading and in between doctor appointments really just enjoying the holidays with the family.
Last Monday (December 22), as you all know from my previous posting, I had an appointment with a fertility preservation specialist, because due to my age and the upcoming chemotherapy, without the fertility preservation, I might not have the option to give Katie a little brother or sister as was originally in the plan for 2009. The meeting with the specialist went well and was very informative; the outcome of which was the following:
1) During the time between the surgery and the beginning of Chemotherapy I will begin taking hormones to increase the production of eggs.
2) The estimated number of eggs expected to be harvest-able (not sure if that's a word) is around 103) Once the eggs are harvested, Mike will contribute to the cause and the eggs will be fertilized and frozen should we decide to use them later
4) If we decided to utilize the fertilized eggs down the road, they would be implanted via In Vitro Fertilization
Note: this is actually very comforting knowing that I can "freeze" my biological clock without taking away any options for future babies.
Also on Monday, I continued to inquire about my surgeon at UNC. My friend, Gina, who in an anesthetist at UNC asked around about the surgeon I had been assigned and we discovered that she does not perform many surgeries. It appears she is a part time administrator in the School of Medicine and performs surgery from time to time to keep her skills up to date. My preference, however, is to have a surgeon that performs surgeries all day, everyday - someone who has a lot of practice. I have no doubt that my assigned surgeon would do a fine job, my decision to choose a different one was one based solely on my own peace of mind.
The doctor I have chosen, as it turns out, was the surgeon for a few members of Mike's family (for other oncology related conditions) all of whom had glowing things to say about him. He was also recommended by a friend of a friend who had breast cancer. The downside of this is that he will be out of the office until after the first of the year and only holds clinic on Wednesday and Thursday each week. Based on this the earliest I could get in to see him would be the 8th of January. My friend Gina was able to schmooze my way in to get an appointment on the 5th of January which is his first day back in the office. So, needless to say, I will not be having the Lumpectomy and Node Biopsy on the 29th as was in The Plan - Part I.
On Tuesday (December 23), I went for my scheduled MRI. This was a bit more stressful than I had imagined but I got through it with Mike holding my hand while he took a nap (if only I could have fallen to sleep while I laid perfectly still for 25 minutes). Then Mike and I went to Katie's daycare to enjoy a few minutes of watching Katie and her friends with Santa Claus. At around 2pm our available friends and family joined us at our house in Silk Hope and Mike and I were married. He's officially no longer the "Baby Daddy" :)
As you can tell, I have had lots of things to be grateful for and I had put the Cancer thoughts on the furthest back burner.
On Wednesday (December 24), UNC called with the results of the MRI. They conducted the MRI to get a better image of the tumor than they got from the Mammogram. They wanted to be able to better determine the actual size of the tumor. They informed me during my visit at UNC last Wednesday that they estimated it at 1.8 cm based on the Mammogram, however, they cautioned me that the Mammogram doesn't always give a good concept of the size - hence the MRI. They also cautioned that the MRI is very sensitive and may pick up false positives which may require future biopsy. I actually anticipated them coming back and telling me that they found other suspicious areas, perhaps in the right breast or that the tumor was larger than 1.8 cm, maybe 3.0 cm, I was not, however, prepared for them to tell me that it was actually more than 300% larger than their first estimate.
The tumor is actually 7.5 cm (roughly the size of a lemon). Since the size of the tumor is a primary component for staging, I saw my 5 year survival rate plummet. In addition, the option for lumpectomy was now off the table. On a positive note, a few lymph nodes appeared enlarged, but did not show any evidence of disease. In addition, there were no additional “areas of concern” in the left or right breast. I mean I can’t imagine there is any room in the left for anything else to be going on.
So - my new plan is to meet with my new surgeon on January 5 as well as a plastic surgeon on the same day to discuss options for reconstruction. On January 6, I go back to the fertility preservation MD to start that process. I’ll probably meet with the medical oncologist prior to surgery to ensure that they are in agreement with the surgical plan and that I do not need to receive chemotherapy prior to the surgery. I’m also working on scheduling my second opinion appointment at Duke.
While the MRI results were not good news, I do have so many reasons to be thankful. Just to name a few, I have an incredible support group of family and friends, I have health insurance, I live in close proximity to two major Cancer Centers, I have a job with sick and vacation time and short and long term disability insurance.
I want everyone to know how much I appreciate their well wishes and prayers.
Also - Adriana, Armide, Lisa, Vicky, Alyssa, Randy, Karen, Monty, Katherine, Sandi, Valentina, Dee, Jasmin, Carrie and DeVonn - Thank you so much for coming out to celebrate with me on Monday of last week. It was so thoughtful of everyone who organized that get together and for all of you who had the time to join us...I had a fantastic time and I will enjoy reading all of your notes in my book.
I also want to thank Debbie, Autumn, Cade, Haley, Richard, Beverly, Armide, Vicky, Adrianna, Carrie and DeVonn who all swung into action to make our wedding on Tuesday afternoon so special and sweet. But most of all I want to thank Mike who for better or worse has been and will be the best man I have ever married. :)
Happy New Year!
Love - Gail
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