Saved by C! So far.

This blog posting is a tad long and a definite TMI post, but it’s got some great information in it for women that may be thinking about a hysterectomy at some point. 

  

Wow. A day in the life of Tara is never normal, let alone a week or two.  My head is JUST fine *knock-wood* but so much has happened on the “other” front since I had last written here that I felt compelled to write again.  I’m not doing so to explain myself or my decision, but rather to let my female friends know that there seems to be some truth to folklore medicine out there, at least in my case, and if you can avoid major surgery at all costs, I say do it. So now you’ve probably guessed that my hysterectomy is off the table. At least for now. Why, you may ask? After months of literally bleeding like a pig? Well, since this whole thing started, I’ve been a research fiend, more so than usual. It’s how I learned about hormones affecting my specific brain tumour.  Well, I also read about Vitamin C playing a huge part in women’s health, especially menstruation, and I figured, what do I have to lose? If a vitamin can make my life better, or at least bearable, I’m willing to give it a go. So I read up on our friend Vitamin C. It’s a powerful little thing. Some things to note about this guy.

You shouldn’t take high doses of it if you’ve had or are prone to kidney disease, kidney stones, or breast cancer. It can also interfere with blood thinners and hormonal birth controls, as it induces the production of estrogen while suppressing the production of progesterone. You should also note that taking pure vitamin C (which I take and which is recommended) can be harmful if you are pregnant and can induce abortion if taken in high doses such as 6000mg a day. 

Now that I’ve given you a little information on our friend Vit C, let me tell you that I started by toying with Vitamin C back at the end of July by only taking supplements of 1000mg a day, and  I noted a change in how heavy I was bleeding and I was actually having a day or two of not bleeding pop up. After bleeding constantly since January, I wondered if there was any truth to this folklore. No more insane heavy bleeds and a day off some times? It seemed like a dream. Then I’d miss a day or two of taking my Vitamin C due to having so many Dr’s appointments to attend and just forgetting to take my pills, and guess what would happen? Each time I ended up bleeding heavy for about a week to 10 days. And I’ve kept a daily bleeding log since January, so I know. You can call it coincidence, but after about the 3^rd time I learned my lesson to not miss a dose of Vitamin C again. I’ve since increased my Vitamin C intake to 1500mg daily and I DO NOT miss a dose. The outcome? I’m happy to report that I’m sitting at the 13^th day straight of no bleeding, having come off of 8 days straight of bleeding. And prior to that I went 18 days straight of no bleeding. So I think I may be returning to some semblance of a normal menstrual cycle. And I think I owe it all to my little friend Vitamin C. But what bothers me is that no one, not one Dr had ever mentioned that maybe I had a vitamin deficiency or imbalance that could be contributing to this erratic body behaviour. Instead they either wanted to shove hormones at me or put me under a knife. 

 

Now, I know I’m not a Dr, I don’t even play one on TV, so my surgeon’s office is on speed dial and has allowed me to keep her there in case I do need to have the procedure done at any point within the next year or shortly after. I guess that’s good. At least I have someone that is willing to take care of me should I need it. But I am wanting to avoid major surgery at all costs, and I think, at least my body is telling me, that I’m on to something here.

~Tara

A big update!

First and most importantly: My MRI results came back as "no evidence of disease progression". I'll take it! My next MRI is in 6 months, at the end of April. It sucks living your life in monthly increments (and it feels that way), but it's the new norm. And then there is the almost equally important upcoming surgery. That's right I found someone to give me a Hysterectomy! After 1 year of crazy bleeding I will finally get some relief. WAHOO! I go in January so I'm just pushing through the next 5 weeks.

~Tara

5 months seizure free

Well, it's a small victory, but I'll take it! I saw my neurologist yesterday, and since I've been 5 months seizure free, seizures he suspected I was only having due to my treatment anyways, I don't have to go back and see him for 6 months. That's nice. I like not having appointments every 3 or 4 months. Ultimate goal being no meds at all and therefore no appointments. Stuff ended up getting moved around, and so my MRI is Oct 31 with the results the following week. Provided I get clear results *fingers crossed* I think my MRI's move to 6 months as well. That would be nice.

~Tara

I finally have a surgical consult date!

I finally have a surgical consult date: December 2.  Almost 40 full weeks after this debacle started but I guess it’s better late than never. I did my research into natural ways to fight DUB and I think my daily dose of 1000mg of Vitamin C is working its magic. Since I’ve started taking my C supplement I haven’t had any bleeding, that’s no bleeding for 19 straight days.  And since I have not been bleeding my iron came up from 5 to 8, a mere 3 points away from not being classified as anemic anymore. That’s something to celebrate! Now my hemoglobin levels on the other hand keep going down and I can’t figure out why, right now it’s at 95 and should be between 120-160. The main thing is that my White blood cell count is good and that’s the cell count that helps to fight off infection so I am happy that it hasn’t been affected throughout this ordeal. I will be getting my blood tested again in another 2 weeks or so and hopefully by that point all of my levels will have come up. As for the surgical consult I am keeping the appointment date. I have no idea what will happen with me between now and then, after all December 2 is 11 weeks away and even if my body appears to correct itself by that time I still need to address what has been happening to me since February. Wish me luck!

~Tara

Stuck between A Rock And A Hard Place

Well, it seems I’m stuck between a rock and a hard place. My recent blood work shows that everything is getting worse. I definitely have iron deficiency anemia. In the last 5 months my hemoglobin has fallen from 120 to 99, and in turn my iron levels have plummeted from 24 to 5. I can’t take hormones to stop my bleeding due to them possibly facilitating the growth of my brain tumour, and I’m reading everywhere that it is vital that cancer patients avoid iron supplements and high iron-containing foods with significant absorbability, such as red meats. So what do I do? Even if I can get the surgical consult and get the cause taken care of, I still need to get my blood levels up. I’m so frustrated at the moment. I just don’t know what to do.

~Tara

 

I guess I have reason to be tired.

**ZZZZzzzzzzzzz. *Yawwwnnnn* That’s pretty much how I feel all the time now. It’s actually really interesting that I feel tired more often now than I did throughout my entire treatment last year. But I’m trying to keep up with my daily walks as weather permits, and if I need a nap I will take one. Someone who notoriously rebelled against naps, even during treatment, is now taking them often. Apparently, my brain can take radiation better than my body losing blood. Who knew? Ya know how I push to be your own advocate? I believe a part of that is obtaining photocopies of your bloodwork and subsequent test results in order to track your own progress, good or bad, so that you can self-monitor what’s happening with yourself. Lets face it, Drs tend to glance at your tests, and if nothing serious pops out at them at that visit they say, “things look good.” Well, I saw my family Dr yesterday and again, “things look good.” Riigghhtt. I got my copies, came home and compared my hemoglobin and my ferritin levels from April until August to see what my continued blood loss is doing to me. My counts have dropped drastically. In fact, my hemoglobin has gone from 122 to 106, which is low as your counts should be between 120-160. I probably won’t end up on anyone’s radar until it drops below 100, however that probably isn’t a good thing, especially since my ferritin count (iron) has depleted greatly since April. It’s supposed to sit between 10-291, and while mine was a cushy 24 back in April, my latest bloodwork has said it’s down to 6. Well, no wonder I’m tired all the time! I pushed my Dr to give me bloodwork every 4 weeks so I can track my own progress, or I guess in my case it would be regression? And now I’m looking for ways to bring my iron up naturally. He wanted to throw iron pills at me yesterday, and I declined. Firstly, I know the side effects of them, they aren’t pleasant. Secondly, I also prefer to explore all natural options before I start using medications/supplements to solve an issue. So I’m researching today how to get some good iron that will stick. My understanding is that heme-iron which is obtained from animal vs plant based products is what you want, but I’ll do a lot of research this weekend into how to obtain some good iron. And I’m sure I’ll probably take a nap or two.


~Tara

Be your own advocate. It pays off.

I can not say enough that you need to take your healthcare into your own hands. Please do not solely rely on your Doctor to get things done regarding referrals or what may be in your “best interest,” and do not rely on them as your main source of information regarding your current situation, diagnosis, etc. You need to be pro-active and research it yourself, investigate what options are available to you and which ones will be best for you. The reason I say this is because in dealing with my other issue, the Dysfunctional Uterine Bleeding, as mentioned recently, my Gynecologist wanted to push hormone treatment at me. In researching its effects on my particular cancer, I came to find that it could facilitate the growth of my brain tumour, something my Oncologist wasn't even fully aware of regarding my specific tumour. 

When I brought it to his attention, he did look further into it and advised against all hormone treatment. Hey, they deal with so much on a daily basis, I’m just glad he listened to me and took the time to look into it further. And hopefully I made a difference, in the fact that he’ll think about other female brain tumour patients and treatment options and connections to hormone treatments and their cancers down the road. But it left me in a lurch for treatment options for my DUB. I’m currently at 5 months of continuous bleeding, and this in itself can lead to endometrial cancer,  uterine cancer, or anemia due to blood loss. Not to mention it’s just really a pain in the ass. 

For whatever reason my Gynecologist has removed herself from performing any surgeries or deliveries. Not helpful.  So I searched for the “perfect” Dr and found one in Hamilton. She actually teaches at McMaster, so she’s got to be good, and if I have any surgical procedures within Hamilton, my Drs will be able to access everything immediately regarding my Cancer Care and my Drs on that front. It seemed like a match made in Dysfunctional heaven. So I called her office to see if she was accepting new patients, and she is for surgical procedures only. Sweet! I had a very wonderful and informative 20-minute conversation with her receptionist and I met today with my local Gyn to discuss that. She is setting up my referral to the Hamilton Gyn and says that she actually doesn’t like the Endometrial Ablation procedure.  

 So,  my Oncologist says no to hormones, my main Gyn isn’t partial to the EA (neither am I), my family Dr and Gyn both think that a D&C is a waste of time, so as I suspect, this is leaving me in a situation of obtaining a hysterectomy. One I will have to fight for. My body. My uterus. My cervix. My ovaries. But I’m “only 35,” and “no one will touch your uterus.” Really? This is bullshit. I’ve been bleeding constantly for 5 months now and because the Government thinks I MIGHT want to have babies at some point, I can’t have a procedure that will save me from potentially developing cervical or uterine cancer? Several times today my Gyn said to me she is really worried about me developing cervical cancer. Not something that I take lightly. Guess what? The health system hasn’t come up against Tara.  At least it hasn’t felt my full wrath. Yet. So I have researched all of the options normally available to a person experiencing DUB. They are as follows, and in the succession that a Dr apparently wishes you to try them. As you try one and it doesn’t work, try it again. When that doesn’t work, move on to the next treatment.

1.     Hormone treatment

2.     D&C

3.     Endometrial Ablation

4.     Hysterectomy

Seeing as I am unable to partake of option #1, we’d skip into #2. However,  #2 is quite useless, as mentioned above. It needs to be done under a general anaesthetic and is only a temporary band-aid solution that will last a month or 2 each time. Then there is endometrial ablation. Now, about that. I really don’t want to do that. A procedure done, again, under general anaesthetic, and sometimes has to be repeated several times only to push you into a Hysterectomy anyways. The reason I’m against the ablation is this: If a woman who has undergone endometrial ablation develops abnormal bleeding, the usual ways to evaluate this bleeding, such as ultrasound and endometrial biopsy, are not as reliable.

Further to that, while endometrial ablation doesn’t increase the risk of   uterine cancer, it might make early detection more difficult if I were to develop cancer years after the procedure, leading to a worse prognosis. Uterine cancer is usually diagnosed at an early stage – and then is almost always curable – due to the presence of abnormal uterine bleeding, which might be eradicated by the procedure. You can call me a hypochondriac if you wish, but these are real concerns and something that I must consider before undergoing any procedure. I do not want to partake of one procedure to fix one problem to only create another, or exacerbate another in the future.

And then there is the hysterectomy. The “last” option on the list, and the one with a few different options. It’s also one of the reasons I beg you to do your research. My girlfriends reading this, please take note of this if nothing else. There is the “old school” way of getting a hysterectomy, which is abdominally. Yes, it leaves a not so attractive scar, your Dr will definitely talk to you about the added risk of infection and slower healing time due to having your abdomen sliced open, but this is the way you want to have a hysterectomy if you are faced with needing one.

Why? See below.

The “preferred” method for Drs is to laparoscopically remove the cervix/uterus/ovaries or vaginally. Yep, pretty cool they can remove everything vaginally. The benefit to these 2 procedures would be that it’s minimally invasive (a lot less so than abdominally) and the healing time is much less. However, the risk far outweighs the comfort benefits, especially if you are having a hysterectomy to remove any suspicious fibroids.  I credit my subscription to PREVENTION magazine for tipping me off to this information, I then further investigated it, and it led me to the FDA’s website and warning against it. When doing the minimally invasive hysterectomy procedures, a Doctor will use a morcellator [1] to cut up anything they will be removing into small pieces. That includes your uterus, cervix, ovaries, any fibroids they may find, etc. In doing so the morcellator blasts all of those pieces everywhere inside your pelvic area before they remove them.

Importantly, based on an FDA analysis of currently available data, it is estimated that 1 in 350 women undergoing hysterectomy or myomectomy for the treatment of fibroids is found to have an unsuspected uterine sarcoma, a type of uterine cancer that includes leiomyosarcoma. If laparoscopic power morcellation is performed in women with unsuspected uterine sarcoma, there is a risk that the procedure will spread the cancerous tissue within the abdomen and pelvis, significantly worsening the patient’s likelihood of long-term survival. For this reason, and because there is no reliable method for predicting whether a woman with fibroids may have a uterine sarcoma, the FDA discourages the use of laparoscopic power morcellation during hysterectomy or myomectomy for uterine fibroids.

In the Prevention article I read, [2] the woman, Amy Reed, was undergoing a hysterectomy to remove fibroids, she had stage 1 cancer before going in for a laproscopic hysterectomy, she advanced to stage 4 after surgery, after the power morcellator used to break up the tissue, blasted cancer cells throughout her pelvic region. This happened to someone with known cancer, but the fact remains that women can have undetectable cancer being blasted around inside of them when going in for a “routine” hysterectomy. NO THANK YOU. I have enough on my plate to worry about. And when I saw that the FDA advised against the use of power morcellators as of 2014, it really made my decision quite easy. 

Please remember ladies, be pro-active. Trust your gut. And never take no for an answer. Oh yeah, and while Google can scare the crap out of you, it can also be a potential life saver. So now I sit and wait to meet with the new Gynecologist/OBGYN to discuss the surgical options available to me. I’m armed with a lot of knowledge and even more opinions.

~Tara