A setback

Well, today WAS supposed to be my next-to-last chemo. I have been anticipating these last two rounds, so that my life will (sorta) belong to me again. No medical folks micro-managing my life, no tests or treatments. Just me and whatever the day deals me (or that I deal myself). You know: a "normal" life.

[I don't think I have led a normal life since Greg died. And, ironically, that was 4 years ago TODAY. The weeks and months after that seemed to drag, at times appearing to go into reverse. Widows and widowers will know just what I mean by that. The rest of you are fortunate enough to not have faced that.]

Continuing on that aborted chemo: we have a routine now. We drive to my nephew and his wife's home in the Twin Cities area (Minneapolis/St. Paul and its suburbs, for those of you who don't know where that is), where they graciously allow us to stay overnight, free of charge. Then we arise the following morning, grab a cup of coffee at their home, and drive to the University of Minnesota campus area. We have a small breakfast at a local cafe' - okay, it's the Purple Onion - then motor over to the parking ramp which serves many, MANY patients and their families/friends on a daily basis. We must, by nature of the process, first see a nurse/practitioner (or sometimes an M.D.) who goes over previous data. In my case, there's not too much to review, as I have been MOST fortunate to have little-to-no side effects. Then we trudge over the Masonic Clinic, where I must have a blood test at their lab, and then onward to the 5- or 6-hour infusion process of chemo. But. Not. Today. I did have my lab work done, and then we sat, as usual, waiting for our "buzzer" to alert us to proceed to the chemo area. The buzzer is like those devices they hand you in restaurants, so you are summoned when your table is ready. We had been waiting about 40 or 45 minutes, when a young woman appeared in the waiting room and called out, "Jessica?" Of course, I wasn't sure that she was looking for ME. But unfortunately, that was the case. It seems that my platelet count was low, so low that they would not allow the chemo to be administered. I was pissed - just pissed. I had so, SO wanted to have these last two sessions out of the way, to be on my way to having HAIR again. If you have your hair, and have never lost it, you just CANNOT relate to what hair means to a bald woman (or possibly a bald man, either). It makes a woman feminine, gives us a way of presenting ourselves the way WE want to appear. NOT the way that fate has dictated that we appear.

So... of COURSE they could not reschedule me on Tuesday of next week. OF COURSE NOT. Now, instead of May 15th, my next scheduled chemo is May 24th. That's OVER a month after the previous one. And that pushes my next (last?) chemo date to possibly June 14th. Just three weeks before my birthday. Happy friggin' birthday to me...

BTW, they now tell me that they can have my blood test done up here in the Duluth area, so we will NOT have to waste another trip to the Cities with the same damned results. Whooppee... not much consolation for me today.

Sorry, readers. I am just so down and the only way to get this out of my system is to blog about it. Deep down, I know this is just a little setback. But why now, why me? I think these are questions I have been asking ever since May 15, 2008. I am ready for a little "normal".

Going forward

Just a few minutes here to update.

Had chemo # 2 on the 4th (Wed.) and the actual process went much, much better. The staff had the info on the problems from my 1st session and took care to introduce the problem-causing drug at a slow rate, initially, then sped it up gradually.

The biggest problem encountered at this second session was actually BEFORE this session. It seems that, since I have now entered the chemo process, I now need to be cleared (okayed) to go forward with the chemo. A nurse-practitioner does this. No problem with any of that. My "clearing" appt was scheduled for 9:30, which was about the time that I was ushered into a room and my "vitals" were done. And then we sat, and waited, and WAITED, and WAITED. I finally went out of the room, looking for someone to tell that we were STILL waiting - and furthermore, the chemo session was scheduled for 11 am, which was fast approaching. Finally, the nurse-practitioner graced us with her presence. She asked some very non-essential questions and I mentioned my chemo appt. And SHE informed ME that SHE had to "clear" me for this scheduled chemo. I disliked her STRONGLY. That's as nasty as I will get, in print. L and I both agreed that she had that "I am in charge" attitude. A wonderful way to endear her to patients - and guess what? We have to deal with her for each and every chemo appt from now on.

Oh, and the reason that she showed up late? She went to the WRONG patient's room, so someone else was in and out quickly, while I sat and sat, becoming later and later. "I'm in charge" never admitted that to us, btw. Someone else on the staff coughed up that info.

Hair (on my head) is still falling out. Fewer and fewer strands. Sickening. The hair on my legs? Still growing. Still have hair on my arms, as well as eyebrows and eyelashes. Pubic hair, still leaving. And my "privates", without the protective buffering, are now subject to rubbing and chafing against underwear and jeans. No one ever mentions THIS "delicate" subject. So, folks, I am telling this fact NOW. I consider this blog and its current subject, a public service.

Have been enjoying the record-breaking temps (in the 40's), but that will be over in another day or two. So then I have a choice: an appearance-saving wig (NOT warm) or an ugly hat with no hair under it, and said hat will have to worn ALL the time when I am out in public. Yes, it is ONLY hair...

Okay, trying to be upbeat - and truly, I am feeling pretty good, as far as energy and my appetite is sorta ok.

Well, gotta run. Housecleaning calls (yuck) and I need to pop in the shower before I head into town for a blood test. All the fun you can squeeze into one morning!

Ta-ta.

Down, down days

Damn. I wish this was a an upbeat post. It is so, so difficult to be "up" when your hair is falling out by the handsful. This is NOT an exaggeration. I have been told that I will be bald by the time chemo # 2 starts (Jan. 4th), and the body is trying hard to make that schedule.

I KNOW that I am not the first woman to go thru this. That does not mean that I have to embrace it. Hair is so important to a woman, as it is the image she presents to the world. It means her femininity. I have always tried to make sure my hair is attractive and clean, but I don't over-fuss with it (no hairspray, for example).

I have a friend in Texas who has been very supportive of me. She herself went through breast cancer over 4 years ago, and was successfully treated with chemo from May through September. She did not experience radiation. She said she lost her hair - head, eyebrows and eyelashes. I forgot to ask her about body hair. I am losing that, too. So now I will get to experience looking like an ageing porn star. Just what every woman in my age bracket wants.

Another side effect, chipping away at my femininity. I don't know if I will ever feel "sexy", attractive or feminine again. This saddens me greatly. So it hasn't been a great day (again).

I recently purchased a wig, knowing that this was going to come. And brought it to a very understanding, empathetic hairdresser. She was so nice, so supportive. She said that when it comes time to trim my few remaining hairs (my words, not hers), she will do it in any setting where I would feel comfortable, including a private room at the salon.

And one of the nurses who does my INR (blood "thinner" tests) at the local clinic was so supportive, also, today. Her husband went thru some very harrowing chemo and bone marrow transplant (his own marrow) years ago. So she has been very close to a loved one who has experienced some of this. Yes, a different gender, but she KNOWS that this is a bitch to experience.

By the way, we had a good Christmas Eve. Spent several hours in the afternoon with my sister, her s.o., and her son, daughter-in-law, two grandkids, her daughter, our mother and of course, L. After this gathering, we drove to L's daughter's place and spent the rest of the evening with his family. We ended the evening at a 10 pm church service. A very long day for me, but the two gatherings were very nice, very loving.

You will all have to bear with me. My emotions are very close to the surface and I am told that my lowered hemoglobin can be responsible for depression as well as me not being able to tolerate the cold.

Thanks to those who continue to struggle thru this with me.

Non-eventful week?

Warning: this is not an upbeat post.

Dear God, I know that you cannot give me what I most desire for Christmas, my health. So I am aiming for a little easier-attainable goal.

Could you please give me a week or so, WITHOUT complications?

I had my first chemo Dec. 13th. And I felt pretty good about the whole thing, considering: that I experienced male-symptom heart attack symptoms about 20 minutes after the introduction of the first chemo drug. Yes. It felt like ye olde Mack Truck sitting on my sternum (breast bone). My partner flagged down a nurse, telling her that "we need HELP here". The young gal apparently thought he was kidding or overreacting? Then my gluteus max muscles knotted and constricted, very painfully (I don't cry easily folks), enough to bring me to tears. L went looking for "my" nurse, and she practically ran to the side of my chair. (Didja know they give you chemo in a recliner-style chair?) And stopped the chemo. And asked very pointed questions about the level of pain, location of pain, etc.

She started me on a heavier-dose of Benadryl-style drug(s), which made me sound as though I was auditioning for an understudy role for Foster Brooks (an old-time comedian, who sounded like someone genuinely inebriated). And then she resumed the chemo, but at a much slower drip-rate. Plus still had to administer the second drug. So the expected 5 hours was about 6.5 hrs. Sigh.

But I felt pretty good, and we even went to dinner following this incident. Even had a beer, just like "real" people are known to do.

Returned to Duluth on the 14th, still doing pretty well.

Yeah, dumb me. Expected this would last. On the 16th, I started bleeding. Spent Friday night on the futon, which L had draped with a plastic tarp and then an old towel over that. When I was still bleeding Sat. morning, we went to the emergency room. After tests (don't want to go into details), I was admitted to the hospital, where I spent a restless night on one of those little crib-sized beds. The only good thing I can say about that evening is that L picked up a pizza that we shared. Food of the gods...

Finally begged and pleaded for a release Sunday morning. The wonderful female gyn who had hospital duty Saturday/Sunday said she wanted to see me today (this afternoon). I was glad that she was on duty, for I am switching to her (from the male doc that I never really "warmed up" to). One good thing that came out of this.

Dropped a couple of more pounds (hospital food SUCKS) by Sunday morning, so I am on a "junk food" diet until my weight stabilizes. Any excuse to eat ice cream, chocolate, steak, mmm....

And so it goes...

Oh, folks: please stop telling me that attitude is everything, that I am strong, that I will get thru this, that "it's only hair". When YOU are yourself experiencing this, then I give you leave to make these statements. So far, all a "positive" attitude has gotten me, is another "downturn". So (pardon my language) piss on that positive attitude shit. It is hard enough to be upbeat about where my life has headed. So please, PLEASE back off.

Christmas Eve in two days, and I hope I will be around for yet another one next year. Should we put that on a "board" and everyone can take chances? Not a positive week, can you tell?

Round 1 of chemo

So here's the update. We drove to the Mpls. area Monday night, to be there for the 10 am chemo appointment on Tuesday. We stayed at the Hope Lodge, a facility sponsored by and staffed by the American Cancer Society. Most of us are familiar with the Ronald McDonald houses, for families with children. But Hope Lodge is for adults only. This particular one has 40 rooms on two upper level floors, and the ground floor is for shared dining rooms and kitchen areas. You may bring food and refrigerate it there during your stay, and you may avail yourself of stoves and cooking pots and so on. Very nice, very clean, and completely free of charge to the patient and caregiver. This location was originally funded by the Richard Schulze family (he heads up Best Buy), with matching contributions from others throughout the community. His wife died from mesothelioma. As we so often find out, money cannot buy a cure, nor even (in some cases) a timely diagnosis.

The Lodge is on the shuttle run that goes to several of the hospitals and clinics, so that also cut down on expenses (parking ramp). By the time they had the IV in me (thankfully, I did not require a port), it was about 10:30. The first drug was an anti-nausea one (should help for a few days, I am told), and also some light-weight Benadryl-type drug. Then the fist chemo drug, Taxil (Taxol?). About 20 minutes after that started, I had a classic male-symptom of a heart attack. Felt like a large truck had parked in the middle of my sternum. Lloyd flagged down a nurse (not the nurse who was assigned to monitor me) and said that we needed help NOW. Apparently this nurse did not think it was urgent. Then I had additional side effects, severe, SEVERE cramps in my gluteus max (both sides, and I am talking pain on the level of 8 out of 10). Now I am crying. Lloyd finally tracked down "my" nurse, who practically ran to my side. She immediately stopped the chemo and asked very specific questions about what else hurt, degree of pain, etc. She ramped up the Benadryl (making me pretty fumble-mouthed and sleepy), then resumed chemo drug #1 at a much slower rate. Thankfully, the second chemo drug, Carbo, did not have any apparent side effects. But that one will take my hair away. The infusion was slated for about 5 hrs, but due to the stoppage and then re-starting @ a slower rate, it was about 7.5 hrs.

So now I have one session finished. We "celebrated" by going to Susie's Psycho Bar and Grill, up in Northeast Mpls. I had seen this place several years ago on the Food Channel's Diners, Drive-ins, and Dives. It was okay. I was just glad to have an appetite. Had a beer and felt like a "real" person.

Wednesday, on our way out of town, we stopped at a Macy's store (none are up in Duluth), so that I could buy some lingerie. Also picked up some caps that I'll probably want to have for the next year or longer. Apparently, even after everything has halted (chemo and radiation), it takes forever to get ANY hair back.

The nurse told me that Friday will probably be my worst day for nausea. So I hope that means that I will NOT be nauseated the entire time that I am having treatment. Oh, and then there's the diarrhea that comes with chemo, too. Should be some fun holiday gatherings, as I'll have to make sure that I know where every bathroom is located. "Where's Jess???" Guess they will always know where to look, first.

Bought a wig that was amazingly close to my hair color, and I'll have a local hairdresser trim it closer to my own length. I will probably buy one or two other "partial" wigs, which show around the edges of caps and hats. And a soft cap to protect my head, which I am told will be VERY sensitive. In a week or two, L will clip my hair off. I am sure there will be tears associated that.

Knowing 2 people that have gone through treatments, who are willing to share their experiences with me and answer questions, is so SO helpful. I hope that I can also be supportive to someone in the future.

That's it, folks. Lots of emotions that I cannot even begin to share. Thanks for caring enough to read from time to time.

Too tough to handle

Well, my life has taken its usual turn into the toilet.

I start chemo next Tuesday, 3 sessions, 21 days apart. Then 21 days after the 3rd session, 5 weeks of radiation, every weekday, weekends off. (cause to celebrate, yes?). Then resume chemo, 3 more sessions. That effectively screws me for the next 6 + months.

Bald and freezing in this frostbitten part of the country. Lowered white cell count (hello, infections), lowered red cell count (hello, fatigue and anemia), disappearance of all body hair. As if the very treatments are not enough, I will spare you (for now) the other probable side effects.

Had to order a wig and pay extra for the expedited shipping. Otherwise, it will not be here soon enough to insulate my bald head. And a cap to just wear around the house and to sleep in. Homes are pretty cool during the winters up here, and if I am too cold, I awaken and shiver. Already bought myself an electric throw (smaller than an electric blanket - just need enough to cover ME). And I regularly sleep with sox on (don't like to be cold AT ALL).

I am angry -- so SO angry. I wish God would find another Job. This particular one wants so badly to resign from the position that she did NOT sign up for. I thought I cried a lot when my husband died. That is nothing, compared to the tears I am shedding so frequently now.

I know that I will be the subject of gossip, although people who DO talk about these kinds of things, just do not see it that way. I have a few CLOSE friends that I do and will talk with. But those phone calls about "how are you doing?" just do not fly. If you can't be supportive and genuinely mean it, don't bother. Don't tell me what has worked for you (unless you have gone thru these treatments). A very nice acquaintance recently contacted me via e-mail. She went thru chemo for breast cancer several years ago and has already mentioned some good things to me.

The septic-system guy told her that someone undergoing chemo can "kill" a septic system. Huh. Poison for me, poison for someone's septic system when I visit 'em. If it was warm outside, I would volunteer to pee outside. But it isn't, so I won't.

Every time I brush my hair, or wash or comb it, or dig it out of the collar of my winter jacket, I remind myself that I won't be doing this much longer. And I am sad. Hair is so much of what a woman perceives herself to be. Those who remark that "it's only hair" (said by those who have NOT had this wonderful experience) - you can take a flying (fill in the blank). This is not comforting to tell anyone, and especially not to tell a woman. I will spend the next 6 + months feeling and looking absolutely crummy. Trying to eat when there is no appetite, trying to sleep when I am absolutely exhausted yet too miserable to nap, trying to keep warm when my body weight is still not that great, trying to avoid infections (yeah, no one ever coughs or sneezes in this wintry area), trying to get things done when the energy level is down.

My friend (who lives in Texas' Hill Country) told me that Robin Roberts (an ABC news person) merrily went about her "usual" life while dealing with breast cancer. And this friend told me that she discovered that Ms. Roberts was able to do this because she could afford a drug that costs $6,000 dollars and which really beefs up ones energy level. My friend was not that fortunate. Finally, towards the end of her treatment and with her blood counts very, VERY low, she had this drug and realized how nice it would have been, if she could have afforded it all along. There is no justice, no mercy, no equality, where cancer is concerned.

I have some photos of myself with hair. I had them taken, so that I can go into the hairdresser with my wig (delivery next week) and have it trimmed into a reasonable resemblance of my "old" look. When my head is shaved (probably the week after next), I hope to be able to be brave enough to have photos taken and to post them, too. But no promises.

Well, I have probably written a depressing blog that most will not want to read. But it IS my blog, and for me it is a public journal. My life goes on, but I am no so sure that I want it to. Too tough... I will break soon.