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.