Monday, July 28, 2008
We met with the geneticist on Friday and reviewed my family's medical history. I was prepared for a very short conversation as I thought we would focus on my paternal grandmother. She died of breast cancer at the age of 42 in 1943 and had just 2 sons. I know nothing about her sisters or her nieces.
I was asked about my mother’s family, of which there were 12 children and their children. What a mental challenge that was! Not a bad challenge, but a good mind exercise. That took up about 75% of the conversation :-). I went through each uncle and aunt and estimated their ages or age of death and their children’s ages, and any medical history I could remember. It looked like most of my mother’s family has the heart issue.
My father did not have sisters so we do not know if his line had breast cancer. I have been spending every possible moment researching the Riddle/Fletcher family line, trying to find cousins who might know of their family’s medical history. If other relatives have had breast cancer, but no one has had the BCRA gene testing, it might be something we all should look at.
I have decided to have the surgery on August 20th. I have vacillated between having it sooner just to get the cancer out. My daughter asked me what I would do if the BCRA gene came back as positive. I can’t answer that right now. And trust me, this has been swirling around my head constantly.
The research shows that I should have a bilateral mastectomy. But would I really have one? I prefer to have just the lumpectomy and may just do that if the test comes back positive. Well, really, I would rather not have any of this! I’ve been on the message forums at nosurrenderbreastcancerhelp.com and tnbcfoundation.org/index.html to see what others have done. The message from most is – do what you want to do. . . . Be in charge of your body. I can only listen to advice, medical statistics and read what others would have done differently to come up with my decision. And it is a hard decision!
Pray for guidance and wisdom to make the best decision. As Vic says, I'm not the surgery kind of person, so they only get to do it once.
One week for Vic’s surgery! He continues to have episodes of low blood pressure and becomes dizzy. Thankfully, he has been listening to his body and waiting until these episodes to pass before getting active, i.e., driving the car. Otherwise, he says he feels fine.
Thursday, July 24, 2008
I need your prayer support as I make yet another decision.
There is a possibility that I have the cancer gene. Testing will be done tomorrow and the results would be back in 3 weeks. If the test comes back positive, then I would have a bi-lateral mastectomy.
I have been encouraged to schedule my surgery sooner than I had scheduled for August 20 for a lumpectomy due to the 2nd mass and the aggressiveness of the demon cancer.
Do I go forward with the lumpectomy now - like hopefully next week - or do I wait for the gene test results? If said test results come back, then I go in for a 2nd surgery - the bi-lateral.
Monday, July 21, 2008
I am so amazed at the calmness in me. Your prayers are working and we value your support! We are blessed to have such great family and friends!
On Saturday, I was exhausted but more centered and grounded. The high level of stress during the testing and waiting period of this journey has ended.
The focus is back on Vic now and we are counting the days until his surgery. Anyone have a holistic or natural method to clear congestion? He can't take, or shouldn't be taking, decongestants as that raises the blood pressure.
And, Steph, if you REALLY did love me, you WOULD shave your head when I go bald.
Sunday, July 20, 2008
Ultrasound this morning to get as definitive answer – as close as possible before surgery - on the size of the tumor(s). The radiologist reviewed previous films and reports and believes that the mass is a total of 2 cm x 1.5 cm. Much, much better than 4 cm!! It means a much smaller incision and I will be a good candidate for a lumpectomy (partial mastectomy).
I had the pleasure of sitting around the hospital for 4 hours until my next appointment with the surgeon. I put the time to good use and transcribed the CD from the first meeting with the surgeon (don’t know what I’m talking about? Start at the beginning and you’ll see
I asked the surgeon about hypnosis before surgery that studies have shown decreases fear, pain, need for anesthesia and pain medications. She hasn't seen this at Virginia Mason and went on to say that they would probably have to start now for me. I think I was just verbally poked? Vic thought it was funny.My meeting with the medical oncologist was great. I like her! I should have seen her first along this journey and not the surgeon (I think I said this earlier somewhere). The BC is Grade 3, Stage 1 (maybe 2 after surgery). Early breast cancer detected on screening which is the best kind. I am joyous!
I will have a port given my recent non-success with IVs and vein collapse. I am joyous even more! They can draw blood from this port, they can put contrast in it if another MRI or PET scan is needed. Port = no needles
Here are some pictures of a port . . .not for the squeamish: http://diehlmartin.com/infusion/
Here is a safe, non-squeamish website of a port: http://www.breastcancer.org/treatment/chemotherapy/overview/ports.jsp
I am not a medical doctor; each woman’s breast cancer is treated differently as it depends on the type, size, grade and stage. But this is what is recommended for my BC:
Given the negative HER2, tumors like mine tend to have best results from chemo in terms of recurrence. Recurrence of cancer can happen in the first 2 years, but after 5 years, I am safe( r ) with chemo and radiation. The treatment is definitely more intense than those women who have hormone-fueled tumors. But it’s a shorter time frame – compared to the hormone-fueled that have to take pills for 5 years. I will start chemo 3 weeks after surgery. I will have 4 infusions of Docetaxel (Taxofere) and Cytoxan every 3 weeks. If there is cancer in more than 1 lymph node, the number of infusions would be increased to 6.
There will be some nausea, but no vomiting (Yeah!!). Definite hair loss and fatigue. The red and blood cells will be lowered. After the first infusion, I will have an idea of the pattern of fatigue and nausea and other effects for future treatment.
I can breathe now.
Vic continues to have episodes of dizziness and low blood pressure. Some of the side effects from the meds are bothersome. He will see his Internist on Monday to talk about the side effects and the continued dizziness and low blood pressure. Two weeks to go for his surgery!! We can't wait!
Some of the useful links I've found for cancer and treatments, especially for Triple Negatives. (If two negatives make a positive, what does three negatives make?)
No Surrernder Breast Cancer Help
Triple Negative Breast Cancer Foundation forum
Copied over from MySpace, which is the night before my ultrasound, 2nd appointment with surgeon and 1st with oncologist.
Today was an okay day at work; but as I started to wrap up my projects to attend to tomorrow's doctor and laboratory visits, I became tearful again. Oy vey! I thought I was done with them!
I'm scared. Dang frickening scared. Will this surgery be painful? Can I keep my lymph nodes from swelling (lymphedema)? Can I puke at work after chemo without getting on my clothes? Won't have to worry about getting it in the hair, there won't be any!
I've read that after the lymph nodes are taken out, you can't raise your arm for a while. Forever you can't have your blood pressure taken in that arm, you can't carry your purse in that arm, can't have blood draws in that arm. Forever. My right arm is the best for having a blood draw . . . I don't like needles so knowing where it's going to hurt less is important to needle-phobia folks. There is so much that has to be watched for to ensure that I don't get lymphedema. But I'm right handed!!!! Can we switch the cancer to the left side please?
A woman came into my work today that had these compression sleeves on her arms . . kind of like those that have been burned badly by fire - they have to have compression on the burned spots to keep the fluid/swelling down. Then I looked at her neck and saw that she had a compression shirt on. My BC-survivor co-worker told me that this customer had to wear the compression shirt because she got lymphedema. This is all too unreal for me right now.
All these thoughts are jumbling in my mind on things I want to know and want to ask the doctors. How disfigured am I going to be? Will I be a Quarter-Pounder instead of a Big Mac? I have a mental image of a 3/4 ta-ta, kind of like a pie, but with a wedge missing. The surgeon says she can smush things around to fill in the gap of what is taken out. Do I want this? Wouldn't it be better if I have a mastectomy so I can have reconstruction surgery and look "normal".
Saturday, July 19, 2008
I'm not sure if "Beautiful Noise" is appropriate for this entry, but until I find another song title that fits, I'll leave it.
We meet with the surgeon, her resident and the Breast Cancer Coordinator Nurse to review reports and films. Surgeon tries to find the lump, despite me telling her that the radiologist, who did the biopsy, couldn’t feel it. She continues to try to find the lump. Off the exam table now, she starts going over the test results. I can’t hear anything, my brain cannot comprehend until I hear if the cancer has spread through my body or if I am having a mastectomy.
The MRI shows either another mass - so that's 2 - or a continuation of the first one in the shape of a "dumbbell". I've always wanted to have a dumbbell in my ta-ta! MRI findings are similar to the review of the ultrasound imagining. However, ultrasound may have under called the size of the tumor. She believes the 2 masses total 40 mm but it may be larger if there is a space between the two. We need another ultrasound to confirm. This mass is large, but she believes I’m a good candidate for a lumpectomy. She mentions that maybe the medical oncologist will do chemo first to shrink the tumor and thus a smaller incision would be made for the lumpectomy. I like this idea . . .chemo first and smaller incision. I won’t go any other way with the lumpectomy and may decide to do a mastectomy.
Surgeon says that IDC is the most common cancer seen; it has the potential to spread throughout the body. Her/2Neu is negative which is a good thing; Positive is not good. Given that the ER/PR is negative, it is not fueled by estrogen; it cannot be treated with anti-estrogen therapy so consideration is given for chemo therapy. And here I stopped, as in cold-turkey, the hormone replacement therapy (HRT) 2 weeks ago! Hot flashes galore, skin so dry I could use it for sandpaper, fuzzy and dingy brain, or is that because of the stress level?
I saw the radiation oncologist. He, too, tries to find the lump and fails. I do get the pleasure of 6 weeks of daily radiation after surgery and chemo. Thankfully this can be done closer to home and I won't miss so much work.
I thought these doctors were trying to make tortillas with my ta-ta given all that patting and pounding. When the appt with the last doctor on Tuesday ended (and he left the room), I jumped off the table, flashed Victor and asked him if HE wanted to try to find the dang lump!
I'm thinking of putting a label on my ta-ta (kind of like those name tags that say "Hello, my name is. . . ") for Friday’s exams . . . .but my label will say, "No, you cannot feel the lump so quit trying!"
My surgery is scheduled for August 20th. The surgeon wasn't so keen on me waiting, but after we told her about Vic's surgery on August 4th, she was okay with it. That was when she mentioned about maybe doing chemo first.
Lesson learned: Obtain a copy of your pathology report to find out what type of cancer you have, do not be alarmed by things you see on the pathololgy report - it's only one piece of the puzzle. There are many pieces to this puzzle and one part of it should not be focused on.
Second lesson learned: Bring a tape recorder to record the conversation with your doctors (we have a special adapter for the iPod that also records). You will be amazed at how much you missed hearing! Virginia Mason's surgeon records her conversation with you, then gives you a CD of that conversation before you leave her office. It would be great if the radiologist and oncologist do the same.
Third lesson learned: Triple Negative breast cancer isn't necessarily a death sentence. Don't freak until you have the whole puzzle done!Fourth lesson learned: Surgeons are not necessarily the warm fuzzy people that oncologists are. At least, in my case, this is true. Maybe others have a different situation and I would love to hear from you.
Vic is doing much better with his symptoms from his tumor/adrenal gland and getting used to the meds. He had a few days this week where his blood pressure dropped too low and felt crappy. He is anxious to get his adrenal gland taken out and onto the road of health.
I’m scheduled for a MRI at Virginia Mason. My claustrophobia and fear of the MRI escalates the already escalated stress level; so I opt for a conscious sedation. This requires needles. If you haven’t started from the beginning of this blog, stop now and go read. But I am willing to have a needle to get the MRI.
I envision a metal tube with cow udders hanging underneath.
Nurse Eileen seems a little uptight. She attempts to insert the needle for the IV and my vein closes. But she is going to get that needle so help her! It felt like she was making multiple stabs/movements of the needle in my vein. I get nauseous and light-headed and 2 more nurses appear, one flipping my bed backwards (to get blood back to the brain) and the other putting a cold wash cloth on my forehead and is fanning me. Ericka and Elisa are fantastic . . .warm and fuzzy nurses. I like them, but not Eileen who is still trying to get the needle in that vein.
Eileen finally leaves and Elisa gets the IV needle in the other hand. Off we go to the MRI, but it’s Eileen accompanying me. I see the 3 syringes that are connected to my IV that have the wonderful Versed in them. I love Versed! Somebody hooks something up to my back, heart monitors? I’m told to lay down face first on the table and poke my ta-tas through these holes on the tray. Obviously, nurse Eileen has pushed one of those wonderful Versed syringes because I’m not aware of very much. I hear a voice far away saying that we are doing just a test run before the MRI starts. I feel myself go in the tube, a little panic, but it’s okay. I feel someone tying up my arms to my sides and I try to tell them not to do that.
I’m pulled out of the machine on the cow-udder tray and sit up. I look at nurse Eileen and was told that the MRI could not be done; my shoulders are too wide and if they forced me into the tube, my clavicle would be broken. Huh? I’m on Versed, what did you say?
Yes, I am overweight, but I am not super huge overweight. There are tons of women out there who are bigger than me. I think they are lying; nurse Eileen just wants me gone. I’m in the recovery room, being given crackers, apple juice and cheese, standard fare after sedation. I’m trying to communicate that I DO NOT want that IV needle taken out . . . I AM going to get this MRI done. My attempt to ask nurse Eileen about the next steps and to please leave the IV in is met with, “You are done. You will need to contact your doctor for another choice.”
I won’t bore you with the details any further on our experience with MRI @ VM, but we were able to go to Overlake Hospital. They have a MRI machine dedicated to breast imaging and it’s a feet first machine. Hallelujah! Versed is leaving my system as we wait for 2 hours for the MRI to start. Once again, the IV needle is not working, the vein collapses. Did I tell you this is my 3rd poke of a needle? They get a doctor in who is able to get the IV to stay. Can we say 4th poke of a needle?
My Rock was able to sit outside the MRI and we could touch hands. I was further in the tube than I anticipated, but I got through it. My Rock doesn’t know how much I appreciate him!
We miss the appointment with the oncologist because of the delay in the MRI. I later learn, without anyone telling me this, we should have met with her first, then done the MRI at another time.
Lesson learned: Any female considering a breast MRI, go to Overlake Hospital or find a place that has a dedicated breast imaging center.
Second lesson learned: Meet with the oncologist first. Do not pass go, do not meet with the radiation oncologist or the surgeon until you have spoken with the medical oncologist.
I need some prayer support. How easy it is for us to sign a card and say, “I’m praying for you.” Yeah, I might say a little prayer as I am writing that, but I don’t go into the “prayer closet” to pray for them. I am ashamed of myself for doing this. Will I do this again? I don’t think I will. I now know how important it is to have support and know that you have people praying for you. I know my immediate family is praying for me, but will one more hurt?
I did something that is hard for me most of the time. I reached out to acquaintances, past friends and people who are in my email address book, and asked for help and support. I feel embarrassed for doing this as soon as I hit the “send” button. I’m a giver and not a receiver. It is a challenge for me to ask for help. But I did it. Not for attention or sympathy, but because I am freaking scared for my Rock and for me.
I am a basket case. People tell me that I am handling “this” so well. But they don’t see what is really going on inside of me. Yes, I do use humor to release some of the tension and negativity from my body and mind. But I am scared. Okay, I said it. I am scared! I feel the need to not constantly talk about “this” to Vic. I want to have a “normal” relationship with him that is not centered around “this”. But how can our lives be “normal” until we know what “this” is and what the treatment plan is. We need to educate ourselves to be prepared for the doctor visits.
I am so worried about him. He is calm on the outside; what is really going on in his brain? Is he scared? Can someone really be that calm?
He’s my Rock. I don’t like him sometimes and I know he doesn’t like me sometimes. . . it’s called marriage. But he’s my Rock. I think about how my life will be if he doesn’t survive his surgery. But I can’t talk about that fear with anyone. So the thoughts swirl around my brain. What will my life be if he has chemo or radiation at the same time as me? What can I do now to prepare for this possibility. This isn’t really all about me, even tho it sounds like it is. I want to be prepared for the future – I want to be in control. That’s my nature. If I have the information, facts and figures, then when the bad news is delivered, I am prepared to deal with it. I don’t have to tell the world to stop, while I go research. Sometimes you have to make quick decisions and I don’t want to do that under stress or duress.
Will when we be “normal” again? I read stories of BC survivors how they live their lives to the fullest, how the BC has changed their outlook on life. Will I get that way? Could I get that way? To not have to be in control? Not to see the glass half empty?
We research and research and research on the web. This Triple Negative doesn’t look too good. If the BC was fueled by hormones, I could take anti-hormones . . . a pill! A pill for 5 years . . the magic number of 5 for cancer survivorship.
One doc says, “Those tumors that are triple negative are today treated with a combination of chemotherapy, surgery, and radiation. We have no evidence that any additional treatment is useful.” So we research effects of chemo and radiation. I ask Vic to go onto the internet to look at pictures of what a mastectomy looks like. Could he handle looking at it? Will our sex life end? Oh boy, I sure I can get thoughts swirling . . . .but it’s a normal for some people. It may not be your normal, but it is my normal.
Lesson learned: Find a shrink or therapist that you can share these swirling thoughts with. It’s not a sign of weakness if you need a non-family, non-friend to talk to. It may help your job and your marriage.
I have no idea where to start. My internist gives me a name of an oncologist, but I haven't been overly impressed with local doctors.
My co-worker, who was recently diagnosed with cancer, shares with me what she found at Seattle Cancer Care Alliance and Virginia Mason. I had already looked at Overlake Hospital in Bellevue and thought it might be the place I’d like to go. The commute over I405 to Bellevue can be a nightmare sometimes. Which way to go, Joe?
I like the idea of the team concept at Virginia Mason and started the scheduling and testing journey with them. The Breast Cancer Nurse Coordinator is fantastic! I need to get an MRI and blood work done and the Coordinator schedules me for July 15 to meet with three doctors – medical oncologist, surgeon and radiation oncologist. I ask for a copy of the pathology report from the biopsy. The results:
Invasive Ductal Carcinoma
Modified Bloom-Richardson Grade: 3/3 (highest it can get)
Estrogen Receptor: Negative (ER-)
Progesterone Receptor Negative (PR-)
HER-2 NEU: Negative
I am a Triple Negative with Invasive Ductal Carcinoma. We now know what we are dealing with – we think. Vic starts researching; I try to, but the information sets me over the edge. I can’t sleep and I can’t stop crying. I am so scared.
It is still a tearful time for me, not just for myself but for Vic. Seeing my very healthy and active husband become sluggish and ill due to the tumor and his medications has been hard. Vic is taking everything in stride and I thank God for a level-headed man! Heaven knows we don't need two of us in this house freaking out.
Our days consist of going to work, finding something to eat when we get home in the evening, and then researching the Internet, going to bed and repeating. Rather like washing the hair - lather, rinse, repeat.
Actually, Vic is researching on breast cancer and I am in denial playing computer games . I haven't moved past the crying yet, but I know how important it is for both of us to be educated on treatments.
I asked for HRT last year because of menopause symptoms. The HRT kicked me into 9 months of “painless” migraines with epilepsy like features. Now, the vanity of not wanting thin hair and dry skin has caused BC? I decide to quit HRT immediately. Reading about it later, I should have tapered off. Quitting cold turkey can make your menopausal symptoms much worse than when you started HRT. My emotions go into over-drive.
Vic goes to the hospital early August at the University of Washington Medical Center in Seattle (the place he works!). He'll be in ICU after the surgery - because of the blood pressure up and down that is affected by the adrenal gland and the pre-surgery medications.
How long he will be in the hospital depends on the technique they end up doing. Could be 4-6 days. We are praying for laparoscopy, which the doctor will start with first. The doctor won't know if he needs to go to a full operation until after Vic is in the operating room.
Vic has an appointment with a surgeon today. He will have surgery to remove the tumor on his adrenal gland. Now is the guessing game of when; how do we fit this into an unknown schedule for breast cancer surgery or treatment. He is required to take some super duper medication for one month before surgery. BTW – this medication would cost $4,000 for a one month supply if we didn’t have insurance. This is ridiculous, but it also hits home to me that I can’t lose my job and my health insurance. His surgery is scheduled for August 4.
I met with my HR Comp person seeking information about short term disability, what the company’s policy is regarding leave without pay, what is needed as far as hours to have my health insurance continue and more importantly, what is FMLA or the Washington Care Act as it relates to time off to attend to Vic. I’m new at this job and haven’t built up leave balances.
He suggested that we have family or friends spend time with Vic in the hospital and to bring him home from the hospital when he is discharged – thus it will allow me to work and not use what little leave I do have. I’m appalled at this. While I don’t plan on spending every day with Vic in the hospital (3-5 days), I WILL be there for the day of his surgery and once he gets out of the ICU. If something happened to him while I was working, that guilt would be too much to bear.
HR Comp person goes on to say that I’m worrying about this too early; that I need to wait to see what the treatment plan is and then we can talk. No, I want to have things in order so I have some control over my world that feels like it is spinning out of control. Assuming innocence in this person’s discussion, he tells me that his wife had cancer so he is familiar with the process and steps. "She had her chemo on Fridays and went to work on Mondays. Yeah, she was a little tired, but she didn't miss a day of work during her chemo treatments." Good news, I think. I have no idea what happens in chemo because I haven’t researched that far.
He goes on to say, she was in treatment for quite a while, but never missed a day of work. Wow, I’m thinking; maybe this cancer thing isn’t too bad and my job won’t be in jeopardy. His next words were so audacious, I wanted to walk out; “But she didn’t survive her second round with cancer and died.” Oh, but she didn't miss a day of work? I'm sure her employer was glad that she didn't "miss a day of work".
My supervisor is very supportive and I value her. My 2nd coworker - who is a 11 year BC survivor - has been a great support as well. My supervisor is very supportive of me taking whatever time is needed for both Vic and I. I tell her I am concerned about my job and the health insurance. She assures me that I have nothing to worry about. I believe her. I ask if she could give me a days notice if I will be terminated so I can get back onto Vic’s health insurance. Dummy me decided to have my own insurance and was removed from Vic’s insurance May 15. She assures me again that this is not going to happen.
Another person at work tells me things will be fine. They launch into the story of their friend who had breast cancer who happened to be a health nut. The friend ate healthy and exercised regularly. But she died and the thought was that the chemo was too toxic for her system. How does this help me? I’m going to be fine?
I have quite a few melt downs at work, but everyone is supportive. I try to maintain at work and hold off the melt downs for home. We get a copy of the pathology report . . . .
I wish I'd found this website before: http://www.oprah.com/health/soh/soh_oct_main.jhtml
Anxious most of the day since it’s been 4 days since the biopsy. Did they mean 3-4 working days or 3-4 calendar days?
I checked the home voice mail when I got home from work, to find a message from my Internist. It is now 5 minutes after their office closes. I dialed every number I could find on my caller id hoping to reach the back line of her office. No luck. I called the main line again, speaking to the answering service. She is not on call and can not be reached. I informed the operator that she CAN be reached as she was calling with my breast biopsy results. I could not wait until the next day at 9 am to find the answers. The operator (female) gave in and connected me with the Internist.
Internist starts to review the report with me, stating the date the biopsy was taken, how much, etc., etc., and I’m screaming inside. Get to the final answer, dang it!!! She says, “It’s not good. It’s cancer. Now don’t freak out, it was found early so this is good. It is Invasive Ductal Carcinoma”.
Wow! Did not expect this since cancer does not run in my family. My father’s mother died from breast cancer in her 40s. But since I heard for many years that the cancer gene runs in the mother’s side, her cancer wouldn’t have an effect on me. This is a false statement. Cancer can be hereditary from your father's side. It just happens that my father didn’t have any sisters, so we don’t know if that generation would have had breast cancer.
We jump on the computer and start researching. I start to cry. Vic continues to research; I can’t look anymore. Thus starts the researching, crying and denial routine for many days to come.
I think he is as scared as I am but he isn’t saying anything. What are the odds that both of us have cancer at the same time? If we both die from cancer, who is going to take care of my girls? Who is going to be grandparents to C & K? C & M have a Nana, but it’s not me, grandma-grandma.
It's a guessing game and all dialogue so far is "'what ifs; can I get health insurance if I should leave my current job; what happens to short term disability since I've been there for just 2 months, etc., etc. Since I don't have all the answers from the doctors, it's a hanging/waiting game again.
In the past 2.5 hours I've gone from scared, to "it's okay", to scared and boohooing. Damn, I don't need this right now. I need, okay want, to focus on Vic and get him through his stuff. Damn.
I was SOOOOO sure that it was nothing. The news is good, if there can be good news regarding cancer. It's small and it's been found early. The icky word is "invasive". We don't like that word. HATE that word!
The Internist said my next step is to meet with an oncologist to get more details on the pathologist's report. Not sure when that will be. . .but Vic's appt with a surgeon is tomorrow and we'll decide from there on who goes first. lol
He has to go first, he's just having too many symptoms and when you start messing with the heart rate and pressure, I think he wins the contest of who is first.
It's been hard watching Vic on his new medications. He is sluggish, doesn't feel well and has headaches. I don't think I've seen more than 5 days in 18 years that Vic was sluggish and didn't have energy to do anything. He is taking everything in stride and I thank God for a level-headed man! Heaven knows we don't need two of us in this house freaking out.
I find that wearing my bra all the time, even in sleep, helps the discomfort level from the tunnel. The weight of gravity on the unsupported ta-tas hurts more than I’d like. Not a screaming, get me vicodin kind of pain, just uncomfortable.
Since I bruise easily, I am enjoying holding an ice pack to my right ta-ta. The wait begins, 3 to 4 days. Is that 3 days from the day of the biopsy or 3 days from when the histology place receives the cores? Will it be by mail or phone call. Dang, I forgot to ask.
Lesson learned: Ask how you will receive the results - phone or personal visit. You decide how you want to receive the results!
Second lesson learned: Ask for a copy of your pathology report. This is one of the puzzle pieces you will need.
Core-boring-through-rock-needle day at 2 pm.
I'm probably working myself up into a lather for nothing, ,but the “feeling a little pressure and snapping sensation” won’t leave my visual brain. If someone who has had a recent biopsy could tell me how much "discomfort" there is, it might help. At 11 am, I give up. I am not able to do mind-over-matter; I call my internist and ask for a little pill to get the edge off so I can get just get INTO the lobby.
My Rock aka Vic goes with me to the Breast Diagnostic Center but has to wait in the lobby. I asked the assistant if I could have my iPod and the answer is no. No Rock, no iPod, no distractions. I’m not liking this, Lucy. Where is this person who earlier told herself that she was going to be in control? When I’m in control, I don’t freak and I can breathe. Breathing is important. I acquiesce to their regimental attitude and quickly understand that this organization is ruled by an old school doctor. He is the god and everyone around bows down to him.
The procedure begins. They demonstrate the clicking sound. Not too bad, I can handle that. But the “snapping sensation” just doesn’t leave my brain and I am tense. When someone tells you to relax, don’t you tense up more? A joke at this point would work a 1,000 times more for me.
god-like doctor begins. Lidocaine goes in, little pin prick, no big deal; I can handle this. god-like doctor inserts the hollow core needle, no problem, I can handle this. I think I’m breathing; or maybe I’m holding my breath instead. Click goes the machine. No problem, no great pain, just a little burning, no snapping sensation. A few seconds later, he tells me the click is coming. Don’t tell me, dang it. Just do it and do it quick!
He removes 3 cores, puts in a marker so “if future tests are needed, they will know where to look”. I get bandaged up, have another mammogram and an ice pack I stick inside my bra. I told him that it wasn't as bad as I thought it would be, but the "snapping sensation" really set me up for expecting the worse. god-like doctor asks where did I hear about a snapping sensation. "From your instruction sheet", I reply. He shrugs and walks out the door. I hold down right fist with left hand.
Lesson learned: The core needle biopsy doesn't hurt - as in "hand me the Percocet please" pain. It burned a little each time the tissue was taken out, but only for a few seconds.
Second lesson learned: Research doctors who specialize in breast cancer and know who is covered by your health insurance. You may not need this because your biopsy comes back negative. But having a clearer head to think is great should the diagnosis come back as cancer.
I am expending so much energy on speaking to the negative thoughts and fear running in my brain. It feels like a recording tape set on continuous play. Why can’t I be like Vic? His philosophy is no need to get worked up until they tell you bad news. But I do the “what ifs”. I want to be prepared! In truth, it probably is that I want to be in control.
For these “few more pictures”, they squeezed the mammogram machine even tighter. Like tightening the lug nuts on a tire! Breathe, breathe, it’s only for a few seconds; you can do this.
From the mammo room, I was directed to the ultrasound room . . . . and lost it emotionally.
A few weeks ago, Vic (hubby) woke me up at midnight telling me he thought he needed to go to the hospital. His heart woke him up with hard palpitations and he had a terrible headache. Can you imagine being woke up from sleep by your heart beating too fast? I don’t think in the 19 years I’ve known Vic that he has ever had a headache!
We didn't go to the hospital as he didn't have "heart attack" symptoms. He kept having long bouts of hard palpitations and headaches for a few days and finally went to his internist. Doctor sent him to the hospital for some cardiac testing which came back okay. The blood work came back, though, and it was wacky. One of the things they were looking for is normally 0 to .89 in our bodies. . .that’s point 89. Vic's came back at close to 6.0!
He had an MRI and it was confirmed that he has a pheochromocytoma on his left adrenal gland. It is "contained" and doesn't appear to have spread. They won't know 100% until it is removed if the tumor is malignant.
From here on in this blog, anything to do with Vic’s story will be in italics.
Given this with Vic, my stress level has been elevated. Plus, my youngest daughter (31) is scheduled for back surgery in a few weeks, which raises the stress level even higher. Yes, I don’t always see the glass half-full. Needless to say, with the “few more pictures”, the level of stress is topping off the charts.
I didn’t want to look at the ultrasound screen; I didn’t want to see this spot that was on the mammogram. Towards the end of the ultrasound, I peeked at the screen and radiologist’s face. He was looking at his assistant and I saw him shake his head as he removed the transducer. The results are "indeterminable. We can’t say if it is or isn't malignant. The next step is a core needle biopsy and we can do that in our office. This lump could not be felt and could only be found with the mammogram.”
Needles? Wait doc, I’m needle phobic. Like, as in, I can pass out in your waiting room just thinking about what you will do to me with that “core needle”. Core needle? My brain remembers the tv show where a huge boring machine was used to core through rock. This kind of core needle?
I am crying and wanting to hit or smash something. I am so mad that I have to go through this. I am so afraid, but at this point, not of cancer but of the biopsy.
Never having had a digital mammography before, I asked the technician if I could look at the picture. She agreed and took me behind the magic screen. Interestingly, there was a white spot in the right breast. Now, I realize that technicians can’t give a diagnosis, but I went ahead and asked her what was that spot. She proceeded to tell me about the make-up of the breast, i.e., breast tissue, fat, milk ducts, etc. Oh, okay. I go merrily along my way, not thinking about it, probably suppressing what I thought that white spot might have been. Denial can be an effective tool when appropriate.
Today, the radiology office called me at work and said they needed more pictures and a possible ultrasound which we scheduled for June 17th . . . five days to suppress fear. I had to laugh at that word the radiology staff used, “We need a few more pictures”. Like, "Can we get a 8” x 12” framed picture of your ta-ta?” You want a picture of my cat? I can email that to you. Don’t freak, Renee; it’s just another mammo because the technician messed up, I say to the negative thoughts.